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Crest Or Celiac/gluten Intolerance


Wen

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Wen Newbie

Wow reading alot of these posts have answered alot of my questions but brought up more. I was 12 when I started having bad GI problems, went to the doctors and was eventually told i had food alergy's wheat, rye, oats, barley, dairy etc...I was 21 when I was diagnosed with eplipepsy after a grand mal seziure. I was 36 when I was diagnosed with bi-polar. I have had bouts of diahrea all my life but passed it off as alleries I did "cheat" as much as I could. It got worst about 6 months ago when I had to stay home from work because of severe diahrea (like water) and I couldn't leave the house. I googled it and found this forum and read all the symptoms of other people and said yes to almost all of them. I went gluten free for a week before going to the GP and found it to be much better. MY GP said I'd have to go back on gluten for testing but if I just wanted to go gluten free that'd be o.k. if it works. My questions...my son has been diagnosed with Mental Health problems, severe anxiety he barely leaves the house, miagraine headaches, muscle aches just no GI problems. How do I convince a 20 year to get tested. He lives at home as he can't work. My other question...my mom was first diagnosed with CREST disease and then they said it was an undiagnosed auto-immune diase that eventually killed her with pulmonary fibrosis. Could this have anything to do with Ciliac Disease?


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jlee2 Rookie

Hi there

I am glad to hear you are feeling a bit better. I think depending on your insurance and where you live you should have the test done. If you haven't been off gluten for too long you might not even have to start eating it again pre testing. If you do, it won't be for long and it will be worth it to have a solid diagnoses. I also think your son should definitely be tested. If you just explain to him step by step the procedure and how simple and easy it really is (sedation and a scope down the throat) and that this could be a chance to really start feeling better he might go for it. I'm not sure how he would respond but has he ever seeked therapy or counseling? It's nearly impossible to get a

Male in their 20's to go but it's worth a shot. Many people do not have GI symptoms of celiac but may suffer pbyscological and neurological side effects. If all else fails since he lives at home try as much as you can to provide him with gluten free foods and see if you notice any difference. I hope things work out for you.

jlee2 Rookie

Also forgot to mention that yes celiac disease is an auto immune disease. It is possible your mum did have it but hard to say if it was linked to cause of death or other underlying problems she may have had.

cap6 Enthusiast

wen - had to respond to you as I feel that my mom had celiac also. She was sick on and off for much of her life, was diabetic, had fibromyalgia, dermatitis, joint pain, bruising, canker sore, constitpation.... well, you name it and of course it was ultimately pulmonary fibrosis that ended her life. When it turned out that I had Celiac my greatest sorrow is that it didn't happen sooner as maybe I could have saved her some grief. My son is having trouble (he is 33) and although he sees what I go through - and have been through - he will not change his eating habits. All we can do is give them the example and the info and trust that at some point they will decide for themselves. That is the best that we can do. I send you and your son my best,

eatmeat4good Enthusiast

I saw these symptoms in my son too. He is 16. I knew he would be resistant to the idea of being gluten free, but I had a talk with him about all the symptoms that could be resolved if this were the problem. He intitially resisted, but because I was only buying gluten free food that is all that was available to him at home. The problem was eating pizza or going out with friends of course. I talked with him a few times about how much better I thought he would feel if he tried gluten free and that was his problem. We discussed testing but he didn't want to do it. We had both been to Dr.'s for muscle weakness, fatigue, depression, asthma, migraine headaches, allergies. I found Celiac.com and went gluten free without testing. I didn't require it of him either. I told him he could have all the pop he wanted if he would try gluten free for one week. He made it 4 days then ate pizza. Just those 4 days of having it out of his system and he had a HUGE reaction after eating that pizza. I was grateful for that because it showed him very clearly that this was causing his problems.

Although it was difficult at first, my son is very grateful to know what was making him so sick. He told me he would never touch it again. And he hasn't except for learning about what has gluten and what doesn't. "Mom? Do Poptarts have gluten in them? Cause I ate one at school and got sick." Yes, son, they do. Other than that he has been improving steadily. He is three months gluten free and has become totally different. More outgoing, no depression, actually affectionate and pleasant, is able to jog now and lift weights and is keeping up with schoolwork easily. None of this was possible before going gluten free.

Your son may really want help and you may be surprised. He may be willing to try if you explain all the symptoms it causes and the things it can help. Try talking to him about the responses of others to the gluten free diet and maybe give him things to read, like the lists of symptoms and brief descriptions about Celiac disease.

He is probably miserable with all of the symptoms he is trying to manage and cope with. Hopefully he will listen to you and see results quickly if he gives it a trial.

Just wanted to share my experience with my son. It has really been a miracle for us.

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    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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