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Still having symptoms

CorgisInOregon
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CorgisInOregon Newbie
CorgisInOregon
Posted

Hi all,

I am new in my diagnosis. I’ve been eliminating gluten for four months, but have still had many times where I have eaten gluten accidentally.

I’ve been working hard to make sure I don’t accidentally eat gluten, or eat something that has been cross contaminated with gluten. However I still have days where I end up with a horrible stomach ache. It doesn’t feel the same as when I get gluttened.

(I’ve also learned that I have other food allergies, like dairy, so I stay clear of those foods as well.)

Is it normal to still have stomach pain/bloating/indigestion even after eliminating gluten from your diet? 
 

thanks!

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Scott Adams Grand Master
Scott Adams
Posted

Recovery can take an average of 2 years IF you are 100% gluten-free. Many people take enzymes like GliadinX (they are a sponsor here) to help them deal with cross-contamination if they eat outside their homes...there are many studies that support their use for small amounts of accidental gluten:

https://www.celiac.com/search/?q=gliadinx&quick=1&type=cms_records2

Above all, you need to be 100% gluten-free, and you may also need to eliminate other things, at least temporarily, like cow's milk, corn, soy, etc., until you've fully healed.

CorgisInOregon Newbie
CorgisInOregon
Posted
  • Author

Thank you for the information. So is it normal to have flare ups during the recovery process? 

DJFL77I Experienced
DJFL77I
Posted

i'm at 5 months and i still have upset stomach..  not as bad as it was a few months earlier though..  its improving.. 

My Dr said 6 - 12 months.....

and don't eat at restaurants...

i never eat out... only fresh foods...

the only "packaged" foods i eat right now is:  Greek Yogurt / certified gluten free,  Bryers vanilla ice cream lactose free / gluten free,  and plain potato chips certified gluten free with only 3 ingredients, organic potatoes, sea salt, sunflower oil..

dairy doesn't bother me

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  • Recent Activity

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    • heart390
      Why now?

      By heart390 · Posted

      Because a close friend has had Celiac for years - I've eliminated gluten after the ER said all I had was a huge pocket of gas several years ago.  The gluten will be my 4th autoimmune disease.  Thanks so much for all your input!!!
    • trents
      Confused about HLA-DQ Celiac gene test result

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      @ainsleydale1700, the additional test information you provided is very significant! Here is the important part: "This test detects IgG antibodies to tTG (tissue transglutaminase), and was performed because your IgA level is below normal. The immune response that occurs in celiac disease often leads to IgG antibodies against tTG." It looks to me that you may be a "seronegative" celiac. The frontline diagnostic tests for celiac disease are IGA tests, especially the tTG-IGA. However, another IGA test ("total IGA") was done to check you for IGA deficiency and you were found to be deficient. That means that the usual IGA tests done to diagnose celiac disease, such as the tTG-IGA, would not be reliable. That is why the IGG testing was done "reflexively" (which means in response to the results of a previous test, i.e., the total IGA test.). The IGG tests are not quite as reliable as the IGA tests for diagnosing celiac disease, meaning, there are more "other" possible causes for elevated IGG test scores. The IGG test did give a borderline positive result, however, so the physician ordered the endoscopy with biopsy to check for damage to the small bowel lining that would be caused by untreated (continuing to consume gluten) celiac disease. The biopsy showed no damage so the doc concluded you do not have celiac disease. However, the monkey wrench in the gears of the doc's conclusion is that he gave you permission to proceed with the gluten free diet which would have allowed for healing of the small bowel lining to commence. How long were you gluten free before the biopsy was taken? And how much damage to the small bowel lining was there to begin with? If the damage was minimal, it might have been fully healed by the time the biopsy was done. And the symptoms you describe involving vitamin and mineral deficiencies, tooth enamel loss, cessation of menses, neuropathy, constipation alternating with diarrhea . . . IMO all scream of celiac disease as opposed to NCGS.
    • trents
      Why now?

      By trents · Posted

      Yes, other health challenges and even severe prolonged emotional distress are thought to be potential triggers for the latent celiac genes. Let me encourage you to get tested for celiac disease as soon as possible so that you can get on with eliminating gluten from your diet, which itself will involve a considerable learning curve in order to become consistent at it. Even pills and meds can contain gluten because wheat starch can be used as a filler. It's important to know if you have celiac disease for two reasons. First, it damages the lining of the small bowel and, over time, wears down those billions of little fingers that make up the lining and produce a huge surface area for absorbing nutrients from the food we eat. The small bowel is essentially the place where all of our nutrition is absorbed. Long term undiagnosed/ignored celiac disease therefore results in nutritional deficiencies even when we are eating well. You don't need that with the other health issues you are dealing with.  Second, many or most people find it difficult to be consistent with the gluten free diet if they don't have a formal diagnosis of celiac disease. It is just too inconvenient and limiting and they begin to rationalize that, "Well, maybe my problems are due to something else." Human nature has a remarkable capacity to rationalize. It can be argued that you can cheat a little bit on the gluten free diet with NCGS because it only creates a little discomfort and distress but not damage. That doesn't work with celiac disease. So, I feel it is important to know which you are dealing with, especially in the case where you have not yet begun the gluten free diet and you are a good candidate for beginning testing. Many people make the mistake of experimenting with the gluten free diet before they get tested for celiac disease and then they have to go back on gluten for weeks or months, the so-called "gluten challenge", in order to achieve valid test results. By the way, autoimmune diseases tend to cluster. When you get one, it is very common to develop others in time. 
    • ainsleydale1700
      Confused about HLA-DQ Celiac gene test result

      By ainsleydale1700 · Posted

      Thank you!  I have the classic symptoms while eating gluten-constipation, diarrhea, weight loss, loss of appetite, etc.  My main problems right now are elsewhere in my body.  Dental issues...my teeth started breaking.  I had two teeth break in the past month.  My dentist looked at my teeth with a camera and said I have no enamel left.  Im really struggling with neuropathy, and gynecological conditions.  My periods stopped 6 years ago and Im not in perimenopause or menopause.  When I consume gluten, my resting HR goes up about 30 points, and takes a week or so to normalize.  The list goes on, its very overwhelming Ongoing vitamin D deficiency, magnesium, iron, blood creatinine is always low, dont know if thats relevant. Below is from the Celiac panel, otherwise the results were normal.  Not crazy high, but I wasnt aware the Celiac panel was included in the bloodwork.  So I didnt prepare for it in advance, and Ive been on a gluten-free diet for the past 4 years High t-Transglutaminase (tTG) IgG: 7, Reference Interval: 0-5, Unit: U/mL This test detects IgG antibodies to tTG (tissue transglutaminase), and was performed because your IgA level is below normal. The immune response that occurs in celiac disease often leads to IgG antibodies against tTG.   I know I have a bad reaction to gluten.  But with the low likelihood of Celiac, any guidance on other paths to explore would be greatly appreciated!  Ive been trying to figure this out for years now, and more issues keep coming up.  It has been so overwhelming.  Thanks again.
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      Why now?

      By heart390 · Posted

      THANK YOU Trents!!!  No, I have not been tested - but have several autoimmune diseases ( MS over 50 yrs.) MAJOR GAS  & fatigue are my most severe problems.  Possibility STRESS helped kick it off?  It's a sad additional problem to add to the latter part of my life!
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