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Could It Be?

i heart baguettes

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i heart baguettes Newbie
i heart baguettes
Posted

Hey everyone,

I think I might have Celiac (obviously!) Here are my symptoms:

- Very painful, chronic C and occasionally D

- Pain after eating

- Muscle weakness and coordination problems

- Very sore lower back/hips/clavicle and shoulders, sometimes to the point it's difficult to walk

- Weight loss of about 90 pounds in two years (Used to be pretty fat to say the least, am now a normal weight)

- Low iron and protein levels

- Pallor/dark circles/brittle hair and nails

- ADHD/depression/insomnia - Medication never helped and if anything made it worse, I'm off it now and with therapy and good friends around, the depression's gone with the exception of a few crappy days here and there.

- And to save the grossest for last, I had unexplained blood in my urine. TMI, I'm sorry!

Basically, in the last few months, I've decided to get checked out because I've had some of the worst stomach pain I've ever had. I've been tested for ulcers, cysts, and have had x-rays of my stomach and GI which were all negative. I did an ELISA test which showed that my only food issues were almonds (which I barely eat anyway) and wheat which led to a Celiac blood test, but this turned out negative as well ... I don't know whether or not to keep pursuing it, gluten and dairy definitely cause much more pain than any other food, especially gluten, and I felt a little better after I'd been off gluten for a week or so. I have friends with celiac disease that seem to think this is it too, but I'm embarrassed to push it on my doctor! I've just had so many things turn out negative that I don't want to seem like a faker. I just don't think it's a coincidence that gluten hurts so much.

So, here you go. Does it sound like Celiac to you guys, and if not, what else could it be? What steps should I take next? Has anyone been identified as sensitive to gluten and wheat on an allergy test but had negative bloodwork for Celiac? I'm just confused and frustrated at this point, and any and all advice would be appreciated.

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eatmeat4good Enthusiast
eatmeat4good
Posted

Many people do not test positive on blood tests for Celiac.

Yet they react violently or become chronically ill from eating gluten.

Don't push it on your Dr. Just push the gluten off of your plate. ;)

You can do a strict gluten free trial and see if it resolves any of your symptoms.

Everything you list sounds suspiciously like Celiac.

It could also be Gluten Intolerance which there is no test for.

Wow. So many people test negative...I think there are several posts like yours every single day. Yet they know they do better without gluten.

You have a lot of Celiac symptoms. It's worth a try doing the diet.

The blood tests nor the biopsy are very reliably diagnostic. But gluten elimination and challenge is 100% diagnostic.

See what symptoms disappear in a 3 month trial. Then you know if it is likely to be something else or not.

Welcome to the board!

mushroom Proficient
mushroom
Posted

It may not be celiac, because that requires that you meet a specific set of criteria and pass very specific blood and biopsy tests, but it certainly sounds like gluten intolerance which exists outside celiac disease, gives the same kind of symptoms, and for which there is no specific test other than the gluten free diet. Scientists are working (a little bit) on trying to figure out why some people test negative but still respond to the gluten free diet. Maybe we will know in our lifetimes?? :rolleyes:

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  • Recent Activity

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      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      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...
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      High DGP-A with normal IGA

      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.
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    • 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.
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