Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Sick? Celiac Disease Maybe?


queeniemikki

Recommended Posts

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to be 125 now 108) but it doesn't look like I lost any weight because for all the weight I lost from my stomach has been replaced by bloat.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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Seeking Newbie

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.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,600
    • Most Online (within 30 mins)
      7,748

    rita jean
    Newest Member
    rita jean
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
    • trents
      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
    • cristiana
      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.