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Celiac?


XxKittykat

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XxKittykat Rookie

I posted this in another section of the boards, but figured I should have put it here first...?

Hi, my name is Kat. I'm 16 1/2 years old and I believe I am celiac. I suffer from severe lactose intolerence, I have fibromyalgia, acid reflux, insomnia, and subluxation. Over the past 2-3 years I have been having strange, unexplainable symptoms. One of the biggest includes bouts of loud, powerful burping, uncontrollable vommiting (large amounts at a time), and horrible bloating with stomach pains. I have felt stomach cramps, stabbing sensations, stomach aches, a feeling in the stomach that I need to burp (this causes me to be unable to sleep lying down at night), and loud stomach sloshing...also, I have felt slight twitches in my stomach (this I believe is caused by food digesting). In addition, I have had headaches, sore throat, itching, an odd rash on my abdomin, hair loss, back/knee/wrist pain, insomnia, poor appitite, buring stomach sensations, weakness, tiredness, intestial pain, unable to urinate dispite drinking loads for water, dizziness, sores in the mouth, hands and feet keep falling asleep, brittle nails, anemia, gas, constipation, muscle cramps, unexplained loss of tooth enamal, and weight loss. I am 5'4" and currently 77 pounds (since begining a gluten-free diet I have gained 4 pounds in 4 days). Last week I removed gluten from my diet and saw an improvment - I had more energy, I have been more upbeat, less bloating, less burping, less vommitting, and sleeping more often. I had been feeling great until yesterday when I had eaten out at the local Bill Millar's - veggie soup, french fries, and a side of beans. Instantly I felt horrible and I've been vommitting and bupring all over again since I woke up this morning and I can't bring my horribly painful bloating down. Sounds like celiac to me! What do you all think? I'm new on here and I have no one else to turn to. Every doctor I've seen wants to shove meds down my throat, send me to an eating disorder counselor, tell me it's "all in my head", or pass me along to another doctor who does the same thing. I've already been tested for lupus, chrone's, and something else that I can't seem to remember. All tests came out negative. It is not candida either, I've been tested and went though that diet for some time (w/o removing the wheat though). Thanks for your time and I appolozige for this post being so long (this was the short version by the way!).

- ~*~Kat~*~ "Lost and doesn't know where to turn"


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mommida Enthusiast

You have numerous symptoms of celiac disease.

The bad news, if you want to get medical testing - you need to keep eating gluten for any tests to be accurate. (Even if the Dr. says the tests are so sensitive, blah, blah, blah)

  • 2 weeks later...
deba Newbie

I posted this in another section of the boards, but figured I should have put it here first...?

Hi, my name is Kat. I'm 16 1/2 years old and I believe I am celiac. I suffer from severe lactose intolerence, I have fibromyalgia, acid reflux, insomnia, and subluxation. Over the past 2-3 years I have been having strange, unexplainable symptoms. One of the biggest includes bouts of loud, powerful burping, uncontrollable vommiting (large amounts at a time), and horrible bloating with stomach pains. I have felt stomach cramps, stabbing sensations, stomach aches, a feeling in the stomach that I need to burp (this causes me to be unable to sleep lying down at night), and loud stomach sloshing...also, I have felt slight twitches in my stomach (this I believe is caused by food digesting). In addition, I have had headaches, sore throat, itching, an odd rash on my abdomin, hair loss, back/knee/wrist pain, insomnia, poor appitite, buring stomach sensations, weakness, tiredness, intestial pain, unable to urinate dispite drinking loads for water, dizziness, sores in the mouth, hands and feet keep falling asleep, brittle nails, anemia, gas, constipation, muscle cramps, unexplained loss of tooth enamal, and weight loss. I am 5'4" and currently 77 pounds (since begining a gluten-free diet I have gained 4 pounds in 4 days). Last week I removed gluten from my diet and saw an improvment - I had more energy, I have been more upbeat, less bloating, less burping, less vommitting, and sleeping more often. I had been feeling great until yesterday when I had eaten out at the local Bill Millar's - veggie soup, french fries, and a side of beans. Instantly I felt horrible and I've been vommitting and bupring all over again since I woke up this morning and I can't bring my horribly painful bloating down. Sounds like celiac to me! What do you all think? I'm new on here and I have no one else to turn to. Every doctor I've seen wants to shove meds down my throat, send me to an eating disorder counselor, tell me it's "all in my head", or pass me along to another doctor who does the same thing. I've already been tested for lupus, chrone's, and something else that I can't seem to remember. All tests came out negative. It is not candida either, I've been tested and went though that diet for some time (w/o removing the wheat though). Thanks for your time and I appolozige for this post being so long (this was the short version by the way!).

- ~*~Kat~*~ "Lost and doesn't know where to turn"

deba Newbie
Hi Kate, You sound ill. You do not have to keep eating gluten to get tested, the doctors may not be helpful to you. Please go to enterolab.com and read the stuff. It is full of information. deba

I posted this in another section of the boards, but figured I should have put it here first...?

Hi, my name is Kat. I'm 16 1/2 years old and I believe I am celiac. I suffer from severe lactose intolerence, I have fibromyalgia, acid reflux, insomnia, and subluxation. Over the past 2-3 years I have been having strange, unexplainable symptoms. One of the biggest includes bouts of loud, powerful burping, uncontrollable vommiting (large amounts at a time), and horrible bloating with stomach pains. I have felt stomach cramps, stabbing sensations, stomach aches, a feeling in the stomach that I need to burp (this causes me to be unable to sleep lying down at night), and loud stomach sloshing...also, I have felt slight twitches in my stomach (this I believe is caused by food digesting). In addition, I have had headaches, sore throat, itching, an odd rash on my abdomin, hair loss, back/knee/wrist pain, insomnia, poor appitite, buring stomach sensations, weakness, tiredness, intestial pain, unable to urinate dispite drinking loads for water, dizziness, sores in the mouth, hands and feet keep falling asleep, brittle nails, anemia, gas, constipation, muscle cramps, unexplained loss of tooth enamal, and weight loss. I am 5'4" and currently 77 pounds (since begining a gluten-free diet I have gained 4 pounds in 4 days). Last week I removed gluten from my diet and saw an improvment - I had more energy, I have been more upbeat, less bloating, less burping, less vommitting, and sleeping more often. I had been feeling great until yesterday when I had eaten out at the local Bill Millar's - veggie soup, french fries, and a side of beans. Instantly I felt horrible and I've been vommitting and bupring all over again since I woke up this morning and I can't bring my horribly painful bloating down. Sounds like celiac to me! What do you all think? I'm new on here and I have no one else to turn to. Every doctor I've seen wants to shove meds down my throat, send me to an eating disorder counselor, tell me it's "all in my head", or pass me along to another doctor who does the same thing. I've already been tested for lupus, chrone's, and something else that I can't seem to remember. All tests came out negative. It is not candida either, I've been tested and went though that diet for some time (w/o removing the wheat though). Thanks for your time and I appolozige for this post being so long (this was the short version by the way!).

- ~*~Kat~*~ "Lost and doesn't know where to turn"

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    • knitty kitty
      Hope you're feeling better.   I use a combination of Thiamine, Cobalamine, and Pyridoxine (Vitamins B 1, B12, and B6) for pain relief.  Together these vitamins together have pain killing effects (analgesic).  They are water soluble, so the body can easily excrete any excess.  They are safe to take.   Hope this helps.   Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/
    • trents
      I did some research on what exactly is gluten . . . what defines it.  "The term gluten usually refers to the elastic network of a wheat grain's proteins, gliadin and glutenin primarily . . . " "The types of grains that contain gluten include all species of wheat (common wheat, durum, spelt, khorasan, emmer and einkorn), and barley, rye, and some cultivars of oat" (emphasis mine) "The storage proteins in other grains, such as maize (zeins) and rice (rice protein), are sometimes called gluten, but they do not cause harmful effects in people with celiac disease." (emphasis mine) From: https://en.wikipedia.org/wiki/Gluten What I found most interesting is that some cultivars of oats contain gluten. Could this explain, in part at least, the controversy surrounding oats? I mean, depending on the source, it could indeed sometimes include gluten and cause a celiac reaction.
    • Scott Adams
      Your point about the limitations of current testing is valid, but the idea of "molecular mimicry" with rice and corn glutens is less clear. While corn contains zein, which can trigger reactions in some celiac patients, rice is generally considered safe and lacks proteins structurally similar to gluten. The term "molecular mimicry" is often overused and not well-supported in the context of all grains. While your experience with corn is noteworthy, extending this to all grains, including rice, may not be scientifically justified. Testing and research should indeed improve, but claims about all grains causing similar reactions need more evidence.
    • trents
      I think Scott speaks truth. And I think there is more to this than the prospect of her having celiac disease. If it wasn't this issue, I'm betting it would be another. 
    • Scott Adams
      So one does need a specific inherited gene in order to develop celiac disease, so in some way I suppose anyone with celiac disease could take the negative approach of blaming their parents for getting it, however, it also takes some other environmental trigger, such as a specific virus or other factor, and this part is not necessarily caused by the parents. Around 40% of people have the genes to get celiac disease, but only around 1% actually get it.  In any case, we could all go through life complaining about all sorts of different wrongs supposedly caused by our parents, however, it's probably a lot more healthy for everyone to try to deal with life in a more positive way and instead move forward. For most people it's probably far more important to maintain positive family relationships in life than it is to try to attach blame to family members for getting any disease. 
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