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Feeling Like It Finally Is Making A Little Sense

SLB5757

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SLB5757 Enthusiast
SLB5757
Posted

So I got a text message from my mother the other day stating my Uncle's Gastro told him to go gluten-free. Only time will tell if it helps him or not, but my uncle (mothers brother), has had stomach issues just as bad as mine are. He is also a skinny guy, gets the anxiety issues, dental problems, and many other celiac related issues. The Gastro did a scope and bloodwork and confirmed no Celiac - but still thinks he needs to go gluten-free.

I just find it very odd that him and I have had the testing done, test negative, still have all of the symptoms - and feel so much better going gluten-free (Of course we will have to see how he does with the diet). I mean the family history is there with my brother having severe tummy issues, my Uncle, myself - and my uncle stated to me that my Mothers Uncle also had severe tummy issues. So there is a link of some sort - just wish we could figure it out.

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ang1e0251 Contributor
ang1e0251
Posted

If your curious, you could have the genetic testing. That might show you the link your interested in. It doesn't dx celiac disease, but can tell you if you posess the genetic makeup that makes you vulnerable to gluten.

ravenwoodglass Mentor
ravenwoodglass
Posted

You had a wise GI doctor. The false negative rates are really high unfortunately but GI's are getting a bit more knowledgeable about that lately. Personally I would forgo the genetic testing until the US starts to routinely recognize that more than just DQ2 or 8 are celiac related genes. It may not be a long wait though. WebMD had a recent article that states they now are finding that there are more genes associated with celiac. The total now is up to 7 although in other countries the number is 9 so the US has two more to go.

ThatlldoGyp Rookie
ThatlldoGyp
Posted
So I got a text message from my mother the other day stating my Uncle's Gastro told him to go gluten-free. Only time will tell if it helps him or not, but my uncle (mothers brother), has had stomach issues just as bad as mine are. He is also a skinny guy, gets the anxiety issues, dental problems, and many other celiac related issues. The Gastro did a scope and bloodwork and confirmed no Celiac - but still thinks he needs to go gluten-free.

I just find it very odd that him and I have had the testing done, test negative, still have all of the symptoms - and feel so much better going gluten-free (Of course we will have to see how he does with the diet). I mean the family history is there with my brother having severe tummy issues, my Uncle, myself - and my uncle stated to me that my Mothers Uncle also had severe tummy issues. So there is a link of some sort - just wish we could figure it out.

Hi, He could be like my brother, a non-allergic, non-celiac gluten senstive or intolerant (depending on what doctor you talk to). My brother has the genes, has not triggered into the full autoimmune disease as I have, but must still maintain a gluten free diet or he basically becomes non-functional with migraine pain, the big "D" , RLS, brain fog and exhaustion or any combination of those. He has a good doctor to tell him to go ahead and go gluten-free. I hope he feels better soon!

SLB5757 Enthusiast
SLB5757
Posted
  • Author

Thanks guys :)

I hope he can feel better soon. I have tried to give him advice as much as I know (still a novice on the subject myself, but at least I have the internet and my blackberry for crunch time). My uncle is in his 60's, and does not use the internet. He will most likely rely on the library and my mother and I for resources. My mother used to take him food every Sunday because his wife died last year - so she said she will start educating herself on gluten-free cooking since there are now two in the family that are gluten-free. She reads probably 7 books a week,and is online as well, so I am fairly certain she can help her brother through this. His gastro directed him to a nutritionist in our town - and unfortunately it is the same nutritionist that I saw who wasn't familiar with Celiac disease and had limited knowledge of "gluten free". While talking on the phone with him he asked me "so do I just look for "gluten" on the labels"? he has a lot to learn.

Even through what I have learned in a month I managed to get "glutened about 3 days ago from either Taco Bell (tostada shell, chicken, cheese - and rice) or a buffet I went to locally ( I know - dumb idea, but I was really careful having only 3 items maybe - baked potato, grilled chicken, corn chips with cheese sauce, salad with bacon bits and sunflower seeds and cheese sauce). I have spent three days with my tummy almost attacking itself being distended - having constant hunger, and feeling "out there, moody, anxious, and emotional" and then two days of diarreah following. My tummy today - 4 days later is MUCH better -so I know I got into something. I just hope I can give him some guidance through my trials with the gluten-free diet. We just do not have good mentors/education sources locally :(

OK...I will stop going on about this. I just appreciate everyones comments and wanted to share about the family link. My brother was diagnosed with as many allergies as I had - so I am sure he would benefit as well but he is a stubborn Army guy :)

have a great 4th of July weekend all :)

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