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Psychological Impact Of Celiac

Don in Dallas

By Don in Dallas
in Coping with Celiac Disease

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Don in Dallas Rookie
Don in Dallas
Posted

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
freeatlast
Posted

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
sandsurfgirl
Posted

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
Lynayah
Posted

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
VioletBlue
Posted

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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    • Dr. Gunn
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      By Dr. Gunn · Posted

      Exactly! Negative genetics can rule out celiac disease with close to 100% certainty. It takes tTg antibody testing and biopsy confirm the diagnosis in a genetically susceptible individual. 
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      By trents · Posted

      What Dr. Gunn states is essentially true. It is a rule out measure. But be aware that to possess either of the two primary genes that have been identified with celiac disease (or both) doesn't necessarily mean that you have or will develop celiac disease. Almost 40% of the general population carries one or both but only about 1% of the general population will develop active celiac disease. It remains latent until triggered by some stress event which may or may not occur. So, there is a genetic component to celiac disease but there is also an epigenetic component. 
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      By Dr. Gunn · Posted

      Have you had celiac genetic risk testing? A celiac genetic test is accurate with or without gluten in your diet. If you don't carry the celiac risk genes you can effectively rule out celiac disease for life. 
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      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
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