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

I Think It's Celiac...

pdx.lila

Recommended Posts

pdx.lila Rookie
pdx.lila
Posted

Since I can remember I have had stomach aches after eating and I get sick all the time. I'm often too tired to do things and feel like I need so much more rest than a normal 21 year old. After have 3 serious illnesses in the last year (kidney infections, what they think was internal hives and bad pneumonia) I went to see a naturopath. She suggested I try getting off wheat and dairy for a while and see if I felt better. I felt so much better! I finally reintroduced dairy again (I'm a vegetarian and thought I needed the extra calcium/protein) and still felt much better without the wheat. I wasn't as tired and didn't get stomach pain after eating.

In January I went to South Africa for 4 months and while I was there my symptoms got worse. Not only could I not eat wheat,but I couldn't eat anything with gluten. I tried to cut it out,but in South Africa that's pretty hard. Now I'm back home and I'm so frustrated with my body. It feels like gluten is sneaking in to everything I eat. I'm not at all underweight,in fact I've gained almost 25 pounds in the last year alone, but I get horrible stomach pains after eating gluten, my body tenses up to the point where I feel like I have lead in my veins and can't move, I feel fidgity and like I have to move but I don't have the energy to do it, my kidneys are in intense pain and I feel extremely dehydrated and my brain feels like it's in a fog. I've had joint pain and muscle cramps since I hit puberty but nobody really knew why. I've been on a gluten-free diet(as much as possible) for about 7 months straight now and when I can really stick to it,I don't get muscle cramps, my bones don't hurt and my legs rarely fall asleep from sitting cross legged on the floor.

Does this sound like celiac to folks? I've been to two doctors who are both convinced I have celiac,but the blood tests have both come out negative(they did full workups, including kidney & liver functions & iron tests). I'm going to see a gastroenterologist next week but I feel like I'm getting more and more sensitive. I almost want it to be celiac so I can know why I've had all these unexplainable problems my whole life. It's a bit terrifying because when I accidently have miniscule amounts of gluten it feels like my entire body - internal organs & muscles - decide to give up and stop working.

Sorry this is so long,I'm so upset and frustrated that I had to get it out. Nobody I know has celiac or anything like it and even my Nurse Practitioner mom is a bit skeptical that all my problems are related. My partner is wonderful about it - he's learned all the different forms of gluten and checks all foods for me, he speaks up when we go to friends if I'm too sick or don't know them, and he does his best to make me feel better when I am glutinized. But I want to get back to life when I'm not too tired or in too much pain to function. I'm so glad to have found this board,it's been really helpful to read about other people in the same boat as I am.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

The blood tests could have been a false negative, it does happen more often than many doctors are aware of. You do sound like you could be one of us, the biggest key being the relief you got when you followed the diet. Do make sure that you are eating a full gluten diet if you are going to try and get diagnosed through an endoscopy. You need to be back on gluten for 6 weeks to 3 months for any chance of an accurate biopsy. IMHO though if you got relief from the diet, then got sick when you added it back in that is pretty diagnostic in itself. I hope you get some answers and are feeling better soon.

ang1e0251 Contributor
ang1e0251
Posted

Yes, you do need to be eating gluten for your endoscopy. dr should have told you that. You sound pretty typical to me. Even if by some chance your test is negative, you could still be gluten intolerant; same symptoms, same treatment. So you can go back on your gluten-free diet the day of your test.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,131
    • Most Online (within 30 mins)
      7,748
    Tony White
    Newest Member
    Tony White
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • 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.