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heart390 Newbie

New to. this site!  After 70 years of eating everything - why would I suddenly start having "gluten problems" about 5 years ago???


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trents Grand Master
(edited)

Welcome to the celiac.com community @heart390!

Genes connected with the development of celiac disease remain latent until triggered or activated by some biological stressor. The stressor can be many things and our knowledge in this area is incomplete. Suspects include viral infections, antibiotics, pesticides, preservatives and other harmful chemicals in the environment. The onset of celiac disease can happen at any stage in life. It is a long outdated misconception that gluten intolerance is a childhood phenomenon that you eventually outgrow.

You use the term "gluten problems". What do you mean by that? Have you been formally diagnosed with celiac disease (aka, "gluten intolerance")? There is also NCGS (Non Celiac Gluten Sensitivity or "gluten sensitivity") for which there is not yet any testing available. It shares many of the same symptoms with celiac disease but is not autoimmune in nature and does not damage the lining of the small bowel. A diagnosis of NCGS depends on first ruling out celiac disease for which we do have tests. If you would seek testing for celiac disease, you must not begin the gluten free diet until all testing is done with or you will have invalidated the testing. There are two stages to the testing. The first stage involves a simple blood draw to check for certain antibodies produced by celiac disease. If the antibody testing is positive, doctors normally order an endoscopy with biopsy of the small bowel lining which checks for damaged caused by the inflammation associated with the autoimmune response. That is the second stage of diagnostic testing.

Edited by trents
heart390 Newbie

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!

trents Grand Master
(edited)

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. 

Edited by trents

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    • trents
      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
      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.
    • heart390
      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!
    • Scott Adams
      It’s absolutely worth bringing all of this to your GI appointment. The 2013 CT note about thickening in the second and third portions of the duodenum is especially important, since that area is directly involved in celiac disease and other inflammatory conditions, even if it wasn’t followed up at the time. The weak positive HLA-B27, joint pain, stiffness, numbness, and burning sensations could suggest an autoimmune or inflammatory process, which sometimes overlaps with celiac disease or other gut-related immune conditions. Your periods of neurological symptoms (balance issues, numbness, confusion), low vitamin D, and fluctuating levels despite supplementation are also relevant, as malabsorption can contribute to deficiencies and neurologic complaints. Even “normal” labs are helpful for pattern recognition over time. I’d suggest organizing your records into categories—GI imaging, autoimmune labs, vitamin/mineral levels, neurological evaluations, and symptom timelines—so your GI doctor can see the bigger picture. This kind of long-term pattern can be very useful in connecting dots.
    • trents
      Welcome to the celiac.com community @heart390! Genes connected with the development of celiac disease remain latent until triggered or activated by some biological stressor. The stressor can be many things and our knowledge in this area is incomplete. Suspects include viral infections, antibiotics, pesticides, preservatives and other harmful chemicals in the environment. The onset of celiac disease can happen at any stage in life. It is a long outdated misconception that gluten intolerance is a childhood phenomenon that you eventually outgrow. You use the term "gluten problems". What do you mean by that? Have you been formally diagnosed with celiac disease (aka, "gluten intolerance")? There is also NCGS (Non Celiac Gluten Sensitivity or "gluten sensitivity") for which there is not yet any testing available. It shares many of the same symptoms with celiac disease but is not autoimmune in nature and does not damage the lining of the small bowel. A diagnosis of NCGS depends on first ruling out celiac disease for which we do have tests. If you would seek testing for celiac disease, you must not begin the gluten free diet until all testing is done with or you will have invalidated the testing. There are two stages to the testing. The first stage involves a simple blood draw to check for certain antibodies produced by celiac disease. If the antibody testing is positive, doctors normally order an endoscopy with biopsy of the small bowel lining which checks for damaged caused by the inflammation associated with the autoimmune response. That is the second stage of diagnostic testing.
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