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Sick? Celiac Disease Maybe?


queeniemikki

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queeniemikki Newbie

For the last few months i've been getting really bloated. I'm constipated almost all of the time (and laxatives don't help). I've had random headaches for as long as i remember. Doctors at first thought it was my eyes but eventually just decided there was nothing wrong with me and i must have seasonal allergies (which all the tests came back negative for). Since June i've lost almost 20 pounds unintentionally (used to be 125 now 108) but it doesn't look like I lost any weight because for all the weight I lost from my stomach has been replaced by bloat. But ive never really had bad diarriah which seems like what most people with celiac disease seem to have. I'm also really short compared to the rest of my family (mom 5' 6" dad 5' 11" twin brother 5' 8" and me 5'3". I have super sensitive bones (I've broken 6 bones in 4 years). Lately whenever i stand up o sort of get a head rush and can't see right for a few seconds because these black dots swarm all over my vision. I've always had really thin hair and now I'm just remembering that when i was little i would get rashes that my doctors decided was eczema but now I'm thinking it might have been DH. I've also had reflux since i was 13.

For 4 days last week i stopped eating gluten without telling anyone (I'm 15) and i didn't notice any MAJOR improvements but on friday i started eating it again and since then i've been really bloated and constipated.

Tips on how i should ask my parents to have me tested? It can't have come from my mom's side because she has Chron's disease and before she was diagnosed they tested her for celiac and she was negative. That means she couldn't have given it to me, right? But i want to be tested because mostly all of the symptoms for celiac disease sound like mine.


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I'm new here, but I would just tell your mom what you told us. Say you have been researching it and you want to be tested. You can have it done with a simple blood test maybe at your physical. I can't imagine why she might object. IF she does you can take yourself of gluten and research as you already have done.

  • 2 weeks later...
Booghead Contributor
:ph34r: Well I'm 5'0 and thats normal for my family B) I did lots of research and I was sure I had Crohns, I went to the doctor and they tested me for Celiacs which came back positive. So self-diagnosing doesn't always work. I didn't have much diarrhea either except once when I got really sick. Mostly it has been Constipation for me. Much better off of gluten, also Milk would really make me sick and bloat. Ask her for a blood test but if she says no ( I know how parents can be) then go off gluten and dairy, just try it. Be very careful not to eat any gluten in order to get results, and perhaps if you feel better after 3-4 weeks eat some gluten and see what happens. I'm new to this too. I'm 17, message me if you want to talk.
pricklypear1971 Community Regular

For the last few months i've been getting really bloated. I'm constipated almost all of the time (and laxatives don't help). I've had random headaches for as long as i remember. Doctors at first thought it was my eyes but eventually just decided there was nothing wrong with me and i must have seasonal allergies (which all the tests came back negative for). Since June i've lost almost 20 pounds unintentionally (used to be 125 now 108) but it doesn't look like I lost any weight because for all the weight I lost from my stomach has been replaced by bloat. But ive never really had bad diarriah which seems like what most people with celiac disease seem to have. I'm also really short compared to the rest of my family (mom 5' 6" dad 5' 11" twin brother 5' 8" and me 5'3". I have super sensitive bones (I've broken 6 bones in 4 years). Lately whenever i stand up o sort of get a head rush and can't see right for a few seconds because these black dots swarm all over my vision. I've always had really thin hair and now I'm just remembering that when i was little i would get rashes that my doctors decided was eczema but now I'm thinking it might have been DH. I've also had reflux since i was 13.

For 4 days last week i stopped eating gluten without telling anyone (I'm 15) and i didn't notice any MAJOR improvements but on friday i started eating it again and since then i've been really bloated and constipated.

Tips on how i should ask my parents to have me tested? It can't have come from my mom's side because she has Chron's disease and before she was diagnosed they tested her for celiac and she was negative. That means she couldn't have given it to me, right? But i want to be tested because mostly all of the symptoms for celiac disease sound like mine.

There's a 20% chance a Crohn's patient will be Celiac.

Both are autoimmune diseases. Both are genetic (Celiac has clearer markers than Crohn's).

You are at HIGHER risk with a dx'ed autoimmune disease in your parent.

Celiac can trigger at any time, and just because she had a negative test then doesn't mean she's negative now.

Btw gluten is inflammatory, and many Crohn's patients benefit from eliminating it (I believe even if they aren't Celiac).

Now, mom may not appreciate these facts....

Booghead Contributor

There's a 20% chance a Crohn's patient will be Celiac.

Both are autoimmune diseases. Both are genetic (Celiac has clearer markers than Crohn's).

You are at HIGHER risk with a dx'ed autoimmune disease in your parent.

Celiac can trigger at any time, and just because she had a negative test then doesn't mean she's negative now.

Btw gluten is inflammatory, and many Crohn's patients benefit from eliminating it (I believe even if they aren't Celiac).

Now, mom may not appreciate these facts....

Well I didn't know those things. I do fell much better off of gluten but what your saying is that could still be from Crohns? I had a negative EGD Biopsy for Celiacs. I also had a Colonoscopy that looked normal. I wonder if I might have Crohns still? Or perhaps both?

pricklypear1971 Community Regular

Well I didn't know those things. I do fell much better off of gluten but what your saying is that could still be from Crohns? I had a negative EGD Biopsy for Celiacs. I also had a Colonoscopy that looked normal. I wonder if I might have Crohns still? Or perhaps both?

All I know is that 20% of Crohn's patients are Celiac... My cousin has Crohn's so I looked into it to that degree.

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    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
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      Thank you this really helped. 
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      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
    • trents
      @GlorietaKaro, your respiratory reactions to gluten make me wonder if there might also be an allergic (anaphylaxis) component at work here.
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