I Don’t Like Doctors

Three years ago my daughter M, got mono and “The Swine” at the same time. She was at a camp in West Virginia when 2/3 of the kids got sick, sick, sick. TSM and I made the trip to get her and then he took her straight to the ER where she was diagnosed and quarantined. She was a very sick little girl for a very long time. Ever since then she has struggled with staying well. She gets the “flu” every 4-6 weeks, has chronic headaches and is endlessly exhausted. We brushed it off for a long time as a result of the mono. We were told it takes up to 12 months to get back on track. Then we thought it was allergies or maybe from the hormone changes that take place when one enters the teen years.ย  We had taken her to the doctor a few times to get looked at, but each time were told it’s nothing.

Last year she started to miss a bit more of school and she was getting very annoyed at feeling like crud all the time, so we took her back to the doctor. This time we said, look more closely, something isn’t right.ย  They looked a little harder, but ended up saying, these symptoms are very common with girls this age. After a few months and no improvement we returned and pushed harder. Eventually her doctors agreed to run some blood work, but when all came back perfect they patted us on the head and gave us the boot. The test results were good news and she did seem to be “healthy” except she wasn’t feeling any better.

Each doctor we saw had very little interest in looking beyond the obvious and most thought she was just trying to get out of school.

For the record, she is a straight A, Honor Roll, National Honor Society kid. She is involved in all kinds of after school activities, she doesn’t complain or seek attention and there is zero reason to think she is the kind of person to fake an illness. Plus, you can see she is sick. Her eyes get very glossy, she has a cough and it’s the kind where you can hear stuff in her chest. Often she runs a fever. She sounds nasal and she feels so awful it keeps her from doing things she wants to do like sleepovers or trips with friends.

It’s frustrating, but we have been down this doctors don’t seem to get it road before.

About 2 1/2 years ago my husband was suffering from headaches and all kinds of stomach problems plus he was having seizures. The doctors were only slightly more interested in his problems, but ended up saying we don’t know, good luck with that.

Through a friend and a crap load of research on my part we narrowed down what we thought he could have. I ordered some tests, he took them and we sent them into a lab. The results were he had Celiac. Basically, no gluten. We cut that out and it’s been about 2 years since he has had a seizure and his headaches and tummy issues are totally gone. Easy fix.

It did occur to me that M might also have this problem, but she didn’t have any tummy issues until very recently.

Lately she has been getting worse and worse, so I have been researching like mad and I discovered that often times kids with gluten issues do not have the same gastro issues. Theirs often is in the form of just headaches and fatigue.ย  I have been trying to watch her to see if I can notice any clear connections between what she eats and her symptoms, but she is busy and doesn’t always eat around me. It has been a challenge. The only thing we have been able to pin point is milk. Milk seems to give her a headache and serious bloating, but with her dad’s issues, gluten has to be in the running as a problem.

I thought, ok, we have more info lets go see a doctor (we have a group of doctors in this clinic and we can be assigned any one of them. Some I have met, some I haven’t. This one I hadn’t) and discuss it. Bad, bad, plan.

First off we were put in a room the size of a shoe box with the door closed and a sick doctor. This guy spent the entire time coughing and only covered his mouth about once every six hacks. Most of the time he would just talk and hack and not bother to move his hands from his lap. Well, at least not while coughing. He did move his hands a few times to retrieve eye boogers. Unfortunately, he also moved his hands to roll the boogers in between his thumb and index finger. Both M and I almost threw up.

After a long visit he suggested more sleep, more exercise, and more fresh fruits. Cutting edge stuff there Doc.

So, as with my hubby, I will try to figure this out myself. We are going to start with a totally gluten free, dairy free diet and go from there.

As you can imagine my highly social teenager is super excited about not being able to eat pizza and ice cream with her friends. Giving up dairy alone would be enough to piss me off, but to be 14 and have to deal with team dinners, packing lunches, sleepovers…royal suck. In an effort to help make life less sucky, I am going to spend the weekend experimenting with different recipes with fingers crossed that I can make her some yummy convenient foods.

I found a website called Elana’s Pantry that looks like a great resource. Tomorrow morning we will be having these…

And since she adores bread I will make this…

I went to the store and bought all kinds of ingredients I have never heard of at 3x the price of anything I have ever bought in hopes that the foods from here will be tasty treats.

46 thoughts on “I Don’t Like Doctors

  1. Well with this you will eventually know. First getting it out of your system I was told 6 months from my sister in law who can’t have diary or gluten either. And then be tested. Have you seen an allergist? They may be more helpful or at least I would think so. But if it’s these food allergies you should know fairly soon if she starts to feel better. And I’m sure it sucks very much, I’m a grown adult and having to eat certain things now gets very tiresome. And having to explain and re-explain to people gets annoying. So I can sort of understand her situation. And being 14 and can’t have all the good foods that kids get to eat? That is a total bummer.

    I hope you find out with this experiment what it could be…and well for doctors they just SUCK all of them (except my step mother) She is a nationally known surgeon. She actually cares about her patients.

  2. oh and another thing that was suggested to me by my allergist is…..try one food item at a time if you cut out two then your not sure if your allergic to both or just one. Just my two cents.

    • Yes, yes, one food at a time. With my hubby, I made hm do a cleansing diet for a week and then we reintroduced one food at a time. We discovered it was the wheat, then gluten. He felt better for a few weeks then got ticked, rebelled, and ate pizza…he paid. Hasn’t eaten it since. I just didn’t want to do that to her. I figure start with the most obvious dairy and gluten then introduce one and see what happens. I’m saving the drastic measures hoping I won’t need them:) thanks for the advice.

  3. So sorry you’re all having to go thru this! If it’s any comfort, our oldest was told in college that he had Krohns. Uh…not so fast. He can’t tolerate eggs and has to go lightly on the milk. We figured it out by 1) bringing him home from college for a couple of weeks of Mom nursing, and 2) explaining to him how you start to feed a baby…you introduce one thing at a time to rule out allergies. So, he had to starve for a few days (he was/is a very successful geek, so the Internet saved us all!) and then started introducing foods from the different food groups, all at a very basic level. We figured it out.

    So, M (I know you’re reading over Mom’s shoulder:) it could be worse..you could be just drinking water for 2 days and then eating baby rice cereal! I’m sure you’ll get it figured out.

    Oh, on the bright side, most of our grocery stores now have “Gluten Free” food sections…makes the shopping easier. Good luck to you all…and no fair eating ice cream in front of M!

      • LOL, either we were all posting at the same time, or I’m a bad listener…don’t read before I write. And I don’t care for ice cream either…it just serves as a base for brownies and hot fudge, bananas…you know, the healthy stuff!

  4. Oh boy, that could take a LONG time to sort out. Agree on the allergist as one of those steps… Thoughts and prayers headed your way.

  5. Well I will add to the pile of “have you tried this??” The Sr. at our parrish began to fail – FAIL with a capital F over the past year. She is in her mid 70s and every doc she went do did the “there, there – you have to expect that at your age”. She’s retired miltary – tough as nails and basically said bullshit! Kept looking, finally found a doctor that said: “I know what your problem is – lymes disease”. He’d had it himself, recognized the symptoms (see many in your discriptions of M), confirmed it with specific blood tests and hopfully they found it soon enough to make a difference. She’s the second friend that has contracted it in the last few years.

    I would suggest you might have her checked for it, I see many similarities.

    Regardless, will put her on our prayer list!

    As an aside – had a real suprise this afternoon, a call from OldNFO – what a great conversation!!! Gotta watch it when two old fart vets get on the phone together. What a great way to end my week!! ๐Ÿ™‚

    • You know what…that is excellent. m had 7 ticks a couple of years ago, but we checked right after the hike and removed them and of course we looked for the ring at the site etc which never materialized, but maybe. I will check into that. Thank you!

      What a treat for you and him. Two of my favorite people chit chatting…wish I was a fly on the wall:)

  6. So sorry to hear of her troubles. It does sound like it is food based. With my dealings with doctors most of them have no idea about most problems caused by what we eat. I have felt much better going off of dairy and wheat. I don’t have a website to point you to but when I was doing research for my issues, I found several sites that said when there is a food sensitivity, the pulse rate increases after eating it. I found this to be true with both wheat and dairy. It has made a big difference to get both of them out of my diet.

    • Yes, I have been researching a lot of things and with her dad’s history and our older son’s, am almost 100% positive it is food based.

  7. I know from my sister, who has a gluten allergy, that there are a lot of options out there, although, as you noted, they are at a premium. My family also has a tendency for Krohns, which I probably have the precursots to, but have managed with diet. There may be some alternative methods to examine as we

    • Errors in operation, sorry. Alternative methods. There is conjecture in the medical profession that access to clean, chlorinated water, while admirable, has led to a decline in ‘gut flora’ or beneficial bacteria in the digestive tract. I eat massive amounts of yoghurt to maintain my balance (bless you, Jamie Lee Curtis) and a cousin of mine had a treatment done that boosted her gut flora and sent her Krohns into remission. I dont knoe if there are similar treatments for gluten reactions, but it’s another avenue to explore.

      • I have been reading about that and also about yeast(candida). A serve case ranks at 85 points. When I took the screenng test I scored 27. M scored 209.

        I bought her some soy yogurt which I assume has the same kinds of benefits, but I will look it up to be sure. Thanks.

  8. No advice, but wishing M the best of luck! I get to have water and an occasional ice cube. Getting old sucks. ๐Ÿ™‚

    • Thank you!

      Lol, this whole thing with my husband and M has been a lot for me to adjust to. No biggie, but not only don’t I have any allergies at all, I have no additions. I drink coffee every morning, but if for some reason I miss a morning, no headache or jitters. I don’t get cranky. My body has been very accommodating to me:)

  9. I started to have gut problems at age 13. My family is a bit stoic, so when I complained I was told it was ‘growing pains’. It wasn’t until I was married that I learned my gut problems weren’t normal. I have a wheat allegery. I think my father also had it. 40 years ago I don’t think anybody knew you could be allergic to wheat!

    • Wow, 13. I am sure it was tougher back when we were growing up as the doctors didn’t entertain much outside of the normal big time diseases. Hope you have it under control now.

  10. Your poor husband and M. Geez what a pain in the you know what having to deal with doctors. Now that descriptions of symptoms have been mentioned above, I’m wondering if this is why my husband is always getting massive migraines. The doc put him on migraine pills to prevent and to stop headaches and symptoms. Never did really any tests. He goes back to this doctor for review of how meds worked in about 3 weeks. I worry because the headaches are bad and his stomach is terrible.

    • I used to get serious migraines on about a daily basis. At first, I thought it was all stress-induced (they started during my Navy days, would get so bad I could barely keep my eyes open and the merest movement would send daggers through my skull), and went on a fairly steady diet of Tylenol, then Excedrin, and of course Motrin800 whenever the doc on the sub would so thoughtfully leave the full bottle sitting out on his desk at night (shhhh!). It wasn’t until a few months ago that I decided to cut out sodas, and then caffeine in general. Yeah, withdrawals suck, but the migraines are almost gone, and the ones I do get are usually associated with a lack of sleep and/or stress, and easily managed. I do miss my Mt. Dew, though, but its worth it.

      Oh, and getting one of those memory foam pillows was one of the best investments ever, used to wake up with screaming migraines every morning until I got that pillow. Expensive, but worth every penny.

      • Sandy, of course there are lots of reasons for headaches and stomach aches, but the great thing about gluten/celiac is it is easy to test. Stop eating it and see what happens. Even if he gets an official diagnoses, that is still the treatment. No meds unless the gluten has destroyed other organs and need to be addressed.

        The doc did give M, so meds for migraines as well, but I am going to try diet first. I don’t want her having to take meds.

        I will be thinking of him. Let me know.

  11. I have no idea whats availible in your area, but check out King Arthur FLour’s website, they have a very nice selection of gluten free baking ingredients and mixes. Also take a look at Bob’s Red Mill products for the same. You’ll have to check recipes for the dairy free, but the gluten free I can help with!

      • I vaugely recall seeing a lactose free icecream a while back by me, next time I’m in the store I’ll check. Course, a lactose intolerence isn’t the same thing as an allergy, but….

        My Aunt has celiacs, a friend of mine was diagnosed with it a few years back, and now my SIL has been informed she needs to go wheat/gluten free. So I’ve been keeping track….

  12. Sorry to hear about your girl’s problems. Re today’s doctors…I don’t trust them, not one bit. With clinics it really pot luck as to how good a doc you get. Also, most are over booked with patients. Only a limited time with each patient. Another thing to consider, do most people really know what is in the food they are eating? Some of the foods in today’s stores are nothing but a mix of chemicals. Then factor in what is done to the soil things grow on as well as what is fed out livestock. Also consider what has been said in some of the replys….this “thing” about being “clean”. I truly believe that we have been led down the yellow brick road with all this “germ” bullshit. Kinda odd, for years people used soap….just soap….now we have this disinfectant thing. I can see it now, 20 or 30 years from now it will be against the law to go outside without wearing your plastic bubble…folks will be going around like hamsters in their plastic balls. All kidding aside, as has been mentioned some kinds of bacteria are necessary, even the “bad” ones help to build natural immunity. I’m told that today most if not all doctors have to go through a sort of “course” periodicaly to keep them abreast of new treatments etc. Well, seems to me the doctors we had when I was a kid knew what to do for most things and….it worked. Today there is so much “new” stuff for them to digest that to me….it just hinders diagnosing the problem. Years back doctors would examine you…get you to describe what you were feeling and then come up with something that worked. All that came from experience, not gotten out of the latest update from some agency. I’m 73 years old,in all that time I have only found three doctors that I felt knew what they were talking about. Also it has been over twenty years since I last visited or used a doctor. No way do I intend to start seeing one now.

    • Lol, I have had very good luck with my doctors and the little ones also, but my hubby not so much. M sees the same doctor as my hubby(or group of docs) and they are awful. We will be fixing that.

      Your right though I don’t know if Celiac is “new” or of people have always had it, but to me it makes sense to see a rise in cases as we have so altered food that maybe our bodies were not designed to process. I don’t know. Just want my kid to feel better.

  13. The good news is that being gluten free today is much better than even a few years ago. The options are there, at least. I know a lot of them aren’t quite the same, but better than even 10 years ago. Have you looked at potential external sources? Things such as mold in the house or having the air tested in the house? Just trying to brainstorm here.

    • You are 100% right. Lots of options out there.

      I have looked at outside sources. I don’t think we have mold, but wouldnt hurt to have it checked. No one smokes and we do not have pets. We went to all dye-free and perfume few products like shampoos and detergent. I did that years ago when the Chinese kids came home. I can’t see to find a time when she doesn’t feel well. Better than other times, but never great.

  14. Prayin for you, M, and TSM. As for your opinion of doctors, I’m right there with you. I just don’t trust em. To me, there’s very little interest in getting you all healed up, and very much interest in keeping you “for observation” or “schedule a follow-up to see how this works” in order to keep the money flowing. Sure, there’s a lot out there who are exceptions to the rule, but they are fewer and fewer, and not around these here parts.

    • Exactly! As isaid before, generally I have been very happy with our docs, but we are all healthy. As soon as there was a problem that wasn’t clear cut…major pain!

  15. One of my team has a wife with the disease, has dealt with it from childhood. Their teen daughter is quite a cook. I’ll see if she has any recipes she’d suggest. I do know of one “chip” that’s gluten free, that he brought in once because he was out of his chips and they were awesome! I’ll get the name Tuesday and let you know.

    I hope she feels better soon.

    • No, we aren’t. I guess if we can’t figure it out in the next few months, I will have to start thinking in that direction.

  16. I thought we only had doctor issues in Florida. The booger picker goes beyond anything we’ve experienced yet, but maybe only our surgeons do that while operating on unconscious patients.

    FOR SIX YEARS I had a colonoscopy every six months until the doctors (many) gave up looking for something and said I was faking to get attention. How could I fake bloody diarrhea ? Eventually I had a crohns disease diagnosis, then an ileostomy to save my life. And yet doctors NEVER make mistakes.

    Celiac disease is the newest “fad” disease on the market, yet doctors dismiss it. And look at the harm it is causing your child. I know you must be tied in knots.

    BUT, unlike crohns disease in the 70’s, Celiac is so popular that it is hard to find ingredients in the stores without also finding one beside it that is gluten free.

    The health food store is your best option and don’t pussy-foot around. Let your daughter know “this is a TRIAL. We will treat it like an adventure for ONE WEEK.”

    That way she won’t have an entire life-change shoved in her face. Then cook mom, cook! In just three days, if this is the problem, you should see her eyes start to sparkle again.

    You can make GREAT pancakes with Bisquick gluten free flour.

    • Ugh, sorry about your experience.

      I agree it is much easier to deal with celiac now than a few years ago. It really isn’t too bad at all or it hasn’t been for the hubby.

      Thanks for the encouragement!!

  17. Ugh.
    Reminds me I promised Mrs B I would finally go and do my disability stuff this year.
    Not looking forward to it. I avoid doctor’s offices like the plague.

    (Pun intended)

  18. I suggest you have M examined by a rheumatologist because it sounds like she is dealing with an auto immune disease that could be either complex or simple. Regardless, if itโ€™s something like lupus or MS it is now very treatable and knowing will better enable all of you to deal with it.

  19. I was diagnosed with diabetes over a year ago. With the doctor’s complete inability to accurately predict what would and would not affect my blood-glucose level, I started searching for my own information. Gluten free was the first step.

    What my diet morphed into, though, was basically what is being advertised these days as “Primal Diet” – no grains, corn, potato. At first it seemed limiting, but now it is more a lifestyle than anything, and is easy to follow.

    Blood-glucose levels are what drives everything. I suggest you and your daughter try it, because the benefits you will get from gluten-free will be magnified when you cut out the poisons of the 21st Century.

  20. The child IS sick you must find her a better doctor at all costs. I’d suspect something from that camp. Can you reach out to the other campers parents for info?
    Better than Yogurt, go to a drug store and get Floragen3. One capsul has more good bugs than all the yogurt you can eat in a month.

  21. For the record, we don’t like doctors much either. More on that in a bit.

    After only the first paragraph, my thought was “gluten intolerant”. The rest of the post pretty much confirmed it.

    Haven’t had time to read all the comments yet, as I’m at work, so if I repeat what has already been said, I’m sorry.

    However, this particular topic hits two of our hot buttons.

    A couple of years ago, after many, many years of doctors telling her she had “irritable bowel syndrome” (doctor-speak for “we don’t know what’s the matter”), a trip to a nutritionist had the nutritionist commenting that with all her food allergies my wife sounded like a lot of her patients that had celiac disease. That was really the only thing my wife got from that particular nutritionist, as we already ate better than her plans called for. However, that comment did set my wife to researching celiac disease and gluten intolerance. She found a lab in Texas that we could order test kits from and send in our own samples, independent from the 19th century leeches masquerading as doctors around here. (Turns out we both have genes for both celiac disease specifically and gluten intolerance in general. We got one gene from each parent, but which gene from which parent is anybody’s guess.)

    Current American doctor-think is that celiac disease is a rare, childrens’ disease. That’s what they’re taught, and that’s what they hold to. It’s also wrong and out-dated, and the Europeans have known it for years. As I understand it, Celiac disease is gluten intolerance that specifically targets the small intestines, but there are all sorts of other bodily reactions to gluten in the diet that don’t affect the digestive system at all.

    I’d get the gluten out of her diet entirely (and it’s amazing the number of foods that can contain gluten) and don’t add it back once she’s better just to check. It takes too long to repair that damage to risk it. If your husband has it, there is at least a 50% chance he passed the gene to her. If you also have the genes, either 1 or 2, she would have an even higher chance.

    And yes, to a teenager it sounds like the end of the world, but it isn’t really. It’s just life showing her that she gets to live a little different in order to be healthier. But one or two weeks my not do it. For some people, yes, they react instantly every time they get gluten. Others, it is much more insidious, and the damage is done silently, stealthily, over time. It’s known as “silent celiac”, and often has no discernable symptoms. Until much later. That form is more frequent in men than women, but should not be ruled out.

    Only 3x the price? You found it cheap. Buying the ingredients to replace the bread in our diet knocked a lot of the bread group right out for us. We’ll still occasionally make a GF pizza, or a loaf of bread, but that’s about it. The couple of nationally marketed breads we’ve tried were $5 for a 12-oz loaf that had the texture of sawdust and the flavor of cardboard. We can, and do, make better.

    Sorry for the long post (dang – that’s two long posts in a row for me).

  22. Celiac disease can hide for years or forever without symptoms, yet be actively doing damage in the body. I have a 4 year old grandson with it. Took 2 years to really confirm. He is so sensitive he cannot even go into a bakery or pizza parlor, the dust will set him off. I am reading a book titled “Wheat Belly” by Dr.William Davis ISBN978-1-60961-154-5. Very interesting what he says. I suggest you read it. Good luck with this, it requires a concerted effort to make your kitchen gluten free, especially if someone in the household is still using wheat products. Also, wheat hides in SO many things, like soy sauce. I think there is an app that you can load on you smartphone for when shopping.

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