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Blood Test Negative But Endoscopy Shows Signs Of Celiac

kerri716

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kerri716 Newbie
kerri716
Posted

Hi,

I'm a 29 year old female in generally good health and I've been suffering from issues such as diarrhea, constipation, abdominal pain, bloating, nausea, headaches, body aches, fatigue, numbness/tingling/burning in legs/feet and occasionally arms, itchy bumps on scalp, anxiety and there's probably more I'm sure I'm forgetting to list. I've been back and forth to several doctors and it seems no one can figure out what is going on. I've been told I have fibromyalgia and IBS. I also recently had an endoscopy and was diagnosed with gastritis (cause unknown). Biopsies showed blunting of the villi and mild intraepithelial lymphocytes possibly indicating early celiac sprue. My GI sent me to get a celiac panel which came back negative. Could it be possible that I do have celiac or a gluten intolerance even with negative lab results? Or maybe it is in the early stages and unable to be detected yet by the lab tests? Has anyone else had a negative result that turned out to be celiac? Could the gastritis be related to celiac? Any help would be appreciated!

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ang1e0251 Contributor
ang1e0251
Posted

I'm not a dr but your endoscopy sounds like a celiac disease dx to me. Yes, it is possible for the blood work to be negative and you still to have celiac disease.

I would go on the gluten free diet immediately. I'm betting you see many of those nasty problems resolve over time. Start out simply eating whole foods you prepare yourself like meats, beans, nuts, vegetables and fruits. Probably it would be a good idea to avoid fresh dairy for awhile. You can try to add it back in after a time of healing.

Your body will tell you that you are on the right track. The villi blunting is a red flag of celiac disease and it shouldn't be ignored. Some of us that went on for years with those symptoms can no longer heal from them completely so get on the diet and be well!

kerri716 Newbie
kerri716
Posted
  • Author

Thank you for your input. I'm definitely going to try a gluten free diet and hopefully that will help. I thought that with the results of my endoscopy being what they were, that my diagnosis would be celiac disease or at least a gluten intolerance, but since my lab results came back negative my GI says that's not what it is, but I can try a gluten free diet if I want to. I don't want to continue feeling like crap, so I'm going to try the diet anyway. I guess it's easy for doctors to dismiss you because they are not the ones who feel bad all the time.

nu-to-no-glu Apprentice
nu-to-no-glu
Posted
Thank you for your input. I'm definitely going to try a gluten free diet and hopefully that will help. I thought that with the results of my endoscopy being what they were, that my diagnosis would be celiac disease or at least a gluten intolerance, but since my lab results came back negative my GI says that's not what it is, but I can try a gluten free diet if I want to. I don't want to continue feeling like crap, so I'm going to try the diet anyway. I guess it's easy for doctors to dismiss you because they are not the ones who feel bad all the time.

I'm not a dr either, but I've been reading and researching like crazy, and that sounds backwards to me. From what I've read the blood test is typically performed 1st (which can produce a false negative) and the biopsy is the "gold standard" for diagnosis of celiac. Someone might correct what I've just said, but I'm almost certain that is what I've read over and over. You should google "celiac disease and diagnosis" and see if you have the same findings. Maybe you could print it to take to your dr? *

Also, I have many of your same symptoms and am hopeful they'll go away once I am gluten free! Hope u feel better soon.

Lisa Mentor
Lisa
Posted

Hi Kerri,

Yes, a positive endoscopy and biopsy, coupled with your symptom would most likely indicate Celiac Disease. Serologic panels for Celiac are not as reliable as we would like at this time.

I would think that you will see a marked difference in how you feel by beginning the gluten free diet. There is a load of information here that can help you get started. And, please feel free to ask any question.

Welcome to the Club! ;)

kerri716 Newbie
kerri716
Posted
  • Author

Thanks everyone! I thought it was backwards to get the blood work after the endoscopy and biopsy, especially with the biopsy showing the villi blunting. I'm not sure that my doctor really knows all that much about celiac disease. He said I don't have the typical symptoms of it, but from what I've read, I do. I've been trying to research it and that's how I came across this site. It's nice to be able to get input and support from others going through the same thing. I'm going to try going gluten free to see if that works. I just want to feel better!

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    • 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.
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for food allergies and environmental allergies about 7 months before I started taking Naltrexone, so I don't think that is the cause for me, but that's interesting!  The main thing with the celiac thing that is throwing me off is these symptoms are lifelong, but I don't have intestinal damage to correlate with lifelong undiagnosed celiac disease.
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