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What Test To Have Done First?
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Started by lorah322,

4 posts in this topic

Posted

My son has been gluten free for 3 years. This was on the recommendation from an occupational therapist. His stomach improved immediately. He used to vomit quite a few times during the year (non viral), and the rash on his elbows and knees disappeared. Since that time I feel I have done a lot of research on celiac, and wish I knew to have him tested before ever going gluten free, but at the time I just didn't know.

Fast forward to this year. In January I started letting him have food at birthday parties and whenever they brought special snacks into school for birthdays, fun Fridays etc. he seemed to do well, so we started eating out once a week and letting him have whatever he wanted. Now in the past 2 weeks I started giving him gluten everyday. My husband and I decided to have him tested for celiac. Now I am trying to figure out which dr to go to. I read that the internal biopsy can be done as early as 2 weeks on a gluten challenge. Blood tests need a lot longer time on gluten.. And can easily give a false negative. But what about dh biopsies? He has active lesions on his elbows that have returned because of the gluten. Can he be tested now?

Where do you recommend I start. I have the name of a pediatric GI (who does a lot of work with celiac kids), do I see his pediatrician first for a blood test, or try seeing a dermatologist to have the rash diagnosed?

The rash looks like it's getting worse and I've been keeping an eye on his knees. I feel like it's only a matter of time before his knees break out too.

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Posted

The general rule for a dh biopsy is to have been actively eating gluten for 2 months --- same as for blood panel but with dh, we tend to test false neg. on the blood work 60% of the time. The biopsy for dh has to be taken from clear skin ADJACENT to a fresh lesion NOT ON IT. The patient can't have had oral or topical steroids for 2 months prior.

 

If the Ped has experience with celiac you might start there but has he had experience with celiacs presenting with dh???? It's a different ball game. If the Ped will do a endoscopy but again, those with dh tend to have patchier damage so he may miss it. And I wouldn't count on the 2 weeks rule. The study I read was a very small study group. The problem is, if tested & it comes up negative then docs shut the door on the possibility of celiac disease. 

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I don't understand if someone is intollerant to gluten shall he be forever ?

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I don't understand if someone is intollerant to gluten shall he be forever ?

 

If you have Celiac Disease - It is forever.

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Go To Topic Listing Dermatitis Herpetiformis

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    • psawyer
      Taking Advil to cope with pain?

      By psawyer · Posted

      Advil (ibuprofen) is gluten-free, but can be a stomach irritant, especially if taken on an empty stomach. That said, I will also place my bet on the garlic and onions. As Raven said, eating more than once a day may also help. An empty stomach is likely to be an irritable stomach.
    • ch88
      Mental Trauma

      By ch88 · Posted

      Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • ch88
      Mental Trauma

      By ch88 · Posted

      Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
      1 activated vitamin b12 daily
      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
    • ironictruth
      other food allergy testing

      By ironictruth · Posted

      Thank you. This is really helpful. I will call around next week.  I just want to heal! 
    • kkgirl
      endoscopy showed damage

      By kkgirl · Posted

      My endoscopy showed i had decreased folds in my duodenum. The biopsy came back and showed that my villi were fine... i have been on a gluten free diet for 6 years because i was just told i was intolerant but never had any testing before. when i eat gluten i get sick for 2 weeks. i came down with issues of other foods in march so they were trying to figure out why and wanted to know if i had celiac are not because that would explain why dairy and fructose are a problem.. both intolerant test for both were negative but the fructose test made me extremely sick but it was negative...      Im trying to figure out why i have decreased  folds in the first place. my Gi doctor is stumped on that to why the endoscopy would show damage but the under the microscope are fine. She is going to call the dr who did my scope and then is supposed to get back to  me..    would being gluten free for 6 year make it so there was damage and then my vili are now fine but still cant be seen in the endoscope?

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