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Different Reactions

Jordan Carlson
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Jordan Carlson Explorer
Jordan Carlson
Posted

Hi everyone! I am some what new to all of this. I found out that I am pretty much confirmed celiac through blood test back in September (going for endoscopy/colonoscopy July 18th to confirm celiac and test for IBD as well). I would like some insight though as to the reactions I have been having.  So obviously in the begeinning, my reactions felt somewhat normal to me since me being almost 27 years old now and living with it my whole life. I thought feeling crappy, bloated and in pain was just normal until I realized its not and thats its actualy issue LOL.  But as I have gone longer periods between accidentally eating gluten, my reactions seem to get much worse every time. I also notice that my reactions vary, Sometimes its terrible stomach pain and diarrea, sometimes its painful/uncomfortable blotaing and sometimes its body aches and muscle/joint tightness. I am assuming the reactions vary depending on the amount of gluten I am exposed too. Just wondering if anyone else has similar experiences or can relate to this.

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trents Grand Master
trents
Posted

Welcome to the forum, @Jordan Carlson!

More severe reactions to gluten exposure after a significant period of withdrawing gluten from the diet is quite normal for the celiac. When we are consuming gluten daily our bodies are forced to develop some semblance of tolerance to it like it would for any toxic substance. I was largely a "silent" celiac with only minor symptoms before diagnosis but now have been gluten free for over 20 years. When I accidently get glutened now I become violently ill with hours of cramping, emesis and diarrhea. And yes, reactions can vary with the amount of exposure but there seems to be a threshold.

But I have a major concern for the outcome of the endoscopy you have scheduled on July 18th. If you have been essentially gluten free since September you can expect the results of the endoscopy/biopsy to be compromised because healing of the villous lining of the small bowel has been occurring since that time. Did your doctors not tell you to remain on regular amounts of gluten until all testing was complete?

When people who suspect celiac disease have been off of gluten for a significant time as you have, and then seek testing for confirmation, they must purposely reintroduce gluten into the diet for a period of weeks or months in order to ensure valid testing. Current guidelines are evolving for the "gluten challenge" but many are suggesting the daily consumption of 10g of gluten (an amount roughly equivalent to 4-6 slices of bread) for a minimum of 2 weeks (and preferably longer) in order to reproduce damage to the villous lining of the small bowel sufficient to be detected by the the biopsy when they do the endoscopy. If you started back on gluten today you could squeeze in almost three weeks of exposure. Please take heed.

Paula McVicker Rookie
Paula McVicker
Posted

Hi Jordan 

Trent's comments are spot on.

Unless you want to wait another 10 months for an Endoscopy etc., start eating gluten now. Unfortunately that's how it works, but, if the test confirms Coeliac, then you will be on the right road to recovery sooner.

Good luck on your journey & keep us informed.

Jordan Carlson Explorer
Jordan Carlson
Posted
  • Author

Thank you for your answeres! Sorry @trents I should have added that I am instructed to consume gluten for 2 weeks prior to the scopes for the reason you stated. Not ideal by any means but I am fortunate enough to of gotten the two weeks off of work for medical leave so atleast I can suffer at home LOL. Unfortunately with the medical personal we have in town where I am located, it has taken almost a full year since the blood work came back positive for celiac to get in for the scopes.  But I am commited to this until the end as it is something I have struggled with my entire life and finally found an answer. 

 

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    • trents
      Weakly positive DGP IgA

      By trents · Posted

      If your total IGA is low then the values for the other IGA tests cannot be trusted. They will be depressed. Celiacs who have the DQ2 gene typically are on the more sensitive side as opposed to those who only have the DQ8. But keep in mind that having either or both of those genes does not equate to having celiac disease as 40% of the general population have one or the other and only about 1% of the general population develops active celiac disease. Genetic typing can be used for ruling it out, however. Because of the low total IGA, symptoms and the possession of the DQ2 gene, my suggestion would be for you to go seriously gluten free for a few months and see if your symptoms improve. It may be the only way you can ascertain if you are gluten intolerant because of the low total IGA.
    • Cat M
      Weakly positive DGP IgA

      By Cat M · Posted

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    • Scott Adams
      Positive TTG antibody and negative EMA antibody

      By Scott Adams · Posted

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      Old to diagnosis

      By Scott Adams · Posted

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    • trents
      Positive TTG antibody and negative EMA antibody

      By trents · Posted

      Welcome to celiac.com, @Wamedh Taj-Aldeen! Just curious, what is your relationship to the patient? Are you the attending physician? A medical student? A consulted physician? Was a total IGA test ordered? Some physicians are under the dated and mistaken impression that such is only necessary in young children. If total IGA is low, other IGA antibody numbers will be artificially depressed. By the way, it is not unusual to have a positive TTG-IGA and a negative EMA. Are the TTG-IGA numbers borderline high or unequivocally high? There are other diseases and medical conditions that can cause elevated TTG-IGA numbers besides celiac disease but when this is the case, the numbers are usually not dramatically elevated. It can also be the case that villous damage was patchy and affected areas were missed during the biopsy. Or, onset of celiac disease was very recent and villous atrophy has not yet progressed to the point of detectability.  We also have occasional anecdotal reports in this online community of positive antibody testing with negative histology, as you report. But we also know that gluten intolerance can manifest itself apart from enteropathy. It can damage other organ systems. Many celiacs are of the "silent" type, meaning there is an absence or a relative absence of symptoms until the disease has become advanced and there is significant damage to the villous lining or other organ systems. But to answer your questions: 1. I would definitely pursue a routine follow-up and recheck of the antibodies. And, I would order a complete celiac panel including total IGA and IGG stuff in say, six months. Sooner if symptoms manifest. 2. It is impossible to say what is the risk of the future development of over celiac disease. I refer you back to my #1 above concerning rechecking.  3. I would definitely pursue HLA DQ2/DQ8 typing as it can be used as a rule out for celiac disease, though not quite with 100% dependability. I hope my thoughts prove helpful to you.
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