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Post Diagnosis, Recovery & Treatment of Celiac Disease
Discussions related to the recovery process after you've been diagnosed.
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Recent Activity
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- VioletM posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms0Neurologist says deficiencies are caused by some malabsorption
Hi, I'm writing here to help my boyfriend who is struggling with doctors and exams that didn't go anywhere. Frustration led me to write symptoms and results from different exams to AI (since I saw the debate about AI as an assistant to diagnosis is wide open) and it said that celiac is the most probable cause of all his symptoms. But I need now opinions... -
- trents replied to KDeL's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms13diagnostic testing variance
But you have already had the genetic testing done and you have results. You have one main celiac gene out of two main celiac genes. You have the HL-DQ8 gene. So, you do have the potential for developing celiac disease. -
- KDeL replied to KDeL's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms13diagnostic testing variance
oh wow that's so interesting! if I do re-scope, I will try to eat gluten more as well. when I do its super light. so maybe trying to keep that consistent for a while then the scope. plus i want to still do the genetic testing to rule it out. that would be so easy if that is negative then I for sure don't have it. -
- trents replied to KDeL's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms13
diagnostic testing variance
Keep us posted about the scoping results. Make sure before the scoping you ask them to take several samples from both the duodenum and the duodenum bulb. Damage can be patchy and is sometimes missed if insufficient sampling is done during the biopsying. -
- KDeL replied to KDeL's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms13
diagnostic testing variance
so all this info has been really helpful... thank you! I recently tested again and was IGA negative for celiac, but further testing says I am positive for one of the variants that is associated with celiac. (HLA DQ8) also says value 1 and 3 for HLA DQA1, but idk what that means. Anyway, now they are suggesting repeat scope. sometimes gluten makes...
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Hi, I'm writing here to help my boyfriend who is struggling with doctors and exams that didn't go anywhere. Frustration led me to write symptoms and results from different exams to AI (since I saw the debate about AI as an assistant to diagnosis is wide open) and it said that celiac is the most probable cause of all his symptoms. But I need now opinions from actual people. However, he doesn't show evident GI symptoms, it happens that he feels nauseous and has some bloating but those could be correlated to his mental health. He is now almost 24 and first symptons showed up at 17 with persistent hand tremors, almost as he is always cold, even when that's not true. He is also irritable and has troubles focusing and with short-term memory (often forgets what he was going to say, doens't remember where henleft keys etc..). There are other symptoms that come and go. For several days (from 1 or 5) symptoms described earlier are much more pronounced. Tremors affect other body parts as teeth start chattering, he has spasms with his head and his arms some of them being directed to specific targets and mimic voluntary actions (like slapping the nearest person, punching a door and throwing things). Other symptoms occurring in these episodes are shouting as he is feeling pain and has troubles speaking. He did some tests thinking it could be Wilson disease due to ceruloplasmin being low, but both urinary and blood copper was low (it was supposed to be high for Wilson). Zinc is also low, excluding the possibility of excessive zinc intake being the cause of low copper. Other low values were folate and alkline phosphatasis. He was diagnosed with an abnormal bipolarism disorder, treated with valproate but it just limited the frequency of those acute episodes. I hope we find an answer soon
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But you have already had the genetic testing done and you have results. You have one main celiac gene out of two main celiac genes. You have the HL-DQ8 gene. So, you do have the potential for developing celiac disease.
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oh wow that's so interesting! if I do re-scope, I will try to eat gluten more as well. when I do its super light. so maybe trying to keep that consistent for a while then the scope. plus i want to still do the genetic testing to rule it out. that would be so easy if that is negative then I for sure don't have it.
-
Keep us posted about the scoping results. Make sure before the scoping you ask them to take several samples from both the duodenum and the duodenum bulb. Damage can be patchy and is sometimes missed if insufficient sampling is done during the biopsying.
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so all this info has been really helpful... thank you! I recently tested again and was IGA negative for celiac, but further testing says I am positive for one of the variants that is associated with celiac. (HLA DQ8) also says value 1 and 3 for HLA DQA1, but idk what that means. Anyway, now they are suggesting repeat scope. sometimes gluten makes me super sick and sometimes I can handle it fine. last night I had bagel and woke up with stomach ache... so Idk. the mystery continues... just dont' want to be eating and damaging my insides for years without knowing it. -K
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