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Psychological Impact Of Celiac


Don in Dallas

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Don in Dallas Rookie

Good Day!! I am in my 4th week of Gluten Free and things are finally beginning to improve. Still have the D and nausea but not as bad as in the beginning. I assume the tummy will get back to normal in time. What I wrestled with initially that I am beginning to give less energy to now, was the fact that bread, pasteries, pizza, etc. were off limits. I loved them all (and my weight 265 lbs showed it). Now, since the 1st of the year (before diagnosis) I have lost 25 lbs. and wearing clothes I haven't worn in years. Now that really makes me feel good.

I also think I am lactose intollerent as well. Had a bowl of gluten free cereal last week and was in the bathroom for hours. I have been reading the forums and find this is not unusual at all. There is a huge learning curve with this illness that I never thought about in the beginning. I do think however, that a gluten free life style, is going to have many more positives than negatives, now that I have gotten past the initial shock of the change in food habits.

I want to thank all of you who participate in this forum. It has been a life saver to read stories from others who have "been there, done that". It is making the journey much easier. I hope in time I can help each of you in someway as well......


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freeatlast Collaborator

Don, that is a very kind thing to say. I, too, wish I had more time to post recipes, etc., and I will when I'm finished with my master's. It's always healthy to give back. I find it keeps me on the right track :) Until then, take care of you and keep up the good work. I know you will since you're already seeing the benefits.

sandsurfgirl Collaborator

Welcome and good job on the weight loss!

I'm on week 6 now of the diet and just starting to feel more "normal." I still have digestive issues but not so bad.

I'm on a pretty simple diet. Most of us find in the beiginning we need to cut diary, soy, some people cut nightshades like tomatoes and potatoes and bell peppers. I also don't eat any gluten free substitutes right now because I can't digest them either. Xanthan gum and tapioca starch are not agreeing with me at the moment.

Most people seem to be able to add back in many if not all the foods they had to cut, even if it's in moderation. It will just depend on how you heal I guess.

Arrowhead Mills has a gluten free baking mix with no tapioca or xanthan gum that I make pancakes and a bread that has the texture of cornbread out of. You do need to make sure you're getting enough carbs to have that energy sustained all day long.

Good luck and keep coming back for support. I can't live without this board right now.

Lynayah Enthusiast

Good Day!! I am in my 4th week of Gluten Free and things are finally beginning to improve. Still have the D and nausea but not as bad as in the beginning. I assume the tummy will get back to normal in time. What I wrestled with initially that I am beginning to give less energy to now, was the fact that bread, pasteries, pizza, etc. were off limits. I loved them all (and my weight 265 lbs showed it). Now, since the 1st of the year (before diagnosis) I have lost 25 lbs. and wearing clothes I haven't worn in years. Now that really makes me feel good.

I also think I am lactose intollerent as well. Had a bowl of gluten free cereal last week and was in the bathroom for hours. I have been reading the forums and find this is not unusual at all. There is a huge learning curve with this illness that I never thought about in the beginning. I do think however, that a gluten free life style, is going to have many more positives than negatives, now that I have gotten past the initial shock of the change in food habits.

I want to thank all of you who participate in this forum. It has been a life saver to read stories from others who have "been there, done that". It is making the journey much easier. I hope in time I can help each of you in someway as well......

What a great attitude. As they say, "Attitude is everything." It is going to be great to have you as part of the forum. Welcome.

VioletBlue Contributor

For me in the beginning I had to take it one day at a time. I could not let myself think "I can never eat bread again." Instead it was "I'm not having bread today." He he, there are still sometimes days like that four years later. It's a coping mechanism. Get through today and worry about tomorrow tomorrow. Don't beat yourself over the head with "I can never".

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    • trents
      Welcome to the celiac.com community, @ainsleydale1700! First, it is very unlikely, given your genetic results, that you have celiac disease. But it is not a slam dunk. Second, there are some other reasons besides having celiac disease that your blood antibody testing was positive. There are some diseases, some medications and even (for some people) some foods (dairy, the protein "casein") that can cause elevated celiac blood antibody test scores. Usually, the other causes don't produce marginally high test scores and not super high ones. Having said that, by far, the most common reason for elevated tTG-IGA celiac antibody test scores (this is the most common test ordered by doctors when checking for celiac disease) is celiac disease itself. Please post back and list all celiac blood antibody tests that were done with their scores and with their reference ranges. Without the reference ranges for negative vs. positive we can't tell much because they vary from lab to lab. Third, and this is an terrible bum steer by your doc, for the biopsy results to be valid, you need to have been eating generous amounts of gluten up to the day of the procedure for several weeks.  Having said all that, it sounds most likely that you have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. The two share many common symptoms but NCGS is not autoimmune in nature and doesn't damage the lining of the small bowel. What symptoms do you have? Do you have any blood work that is out of norm like iron deficiency that would suggest celiac disease?
    • ainsleydale1700
    • Scott Adams
      HLA testing can definitely be confusing. Classic celiac disease risk is most strongly associated with having the full HLA-DQ2 or HLA-DQ8 heterodimer, which requires specific DQA1 and DQB1 genes working together. Your report shows you are negative for the common DQ2 and DQ8 combinations, but positive for DQB102, which is one component of the DQ2 pair. On its own, DQB102 does not usually form the full DQ2 molecule most strongly linked to celiac disease, which is likely why your doctor said you do not carry the typical “celiac genes.” However, genetics are only part of the picture. A negative gene test makes celiac disease much less likely, but not absolutely impossible in rare cases. More importantly, both antibody testing and biopsy are only reliable when someone is actively eating gluten; being gluten-free for four years before testing can cause both bloodwork and intestinal biopsy to appear falsely negative. Given your positive antibodies and ongoing symptoms, it may be reasonable to seek clarification from a gastroenterologist experienced in celiac disease about whether proper gluten exposure was done before testing and whether additional evaluation is needed.
    • Aretaeus Cappadocia
      I agree with your post and have had similar experiences. I'm commenting to add the suggestion of also using nutritional yeast as a supplement. It's a rich source of B vitamins and other nutrients, and some brands are further supplemented with additional B12. I sprinkle a modest amount in a variety of savory recipes.
    • ainsleydale1700
      Hi, could someone help me understand the result of my gene test? DQ2 (DQA1 0501/0505,DQB1 02XX): Negative DQ8 (DQA1 03XX,DQB1 0302): Negative The patient is positive for DQB1*02, one half of the DQ2 heterodimer.  The doctor said I don't have Celiac genes.  I asked him to clarify about my positive DQB1*02, and he said it's a gene unrelated to Celiac.  I have all the symptoms and my bloodwork is positive for antibodies, despite being on a gluten-free diet for the past 4 years.  He also did a biopsy but told me to continue a gluten-free diet and not eat gluten before the biopsy.  Based on the gene test and biopsy (which came back negative) he ruled out Celiac, leaving me very confused.    
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