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What Test To Have Done First?
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4 posts in this topic

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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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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    • gluten intolerance, dairy intolerance and fructose
      I've never gone fructose free so can't help much with that.  But any fruit is probably a problem.  If you are serious about avoiding fructose you could do a search and print out a list of foods to avoid. http://www.mayoclinic.org/fructose-intolerance/expert-answers/faq-20058097 Yes, it very possible to have multiple food intolerance issues.  Many people have multiple food intolerances.  It might help to avoid any foods that are sweet for now.  Meat and most veggies are probably the way to go.  You may want to get some jerky to eat for snacks.  Peanuts might be ok but you'll need to verify that.  Boiled eggs are probably ok.  Most soda would be a no-no.      
    • Help
      Hi Courtney, You asked about dairy, and RMJ got it right.  Celiac disease destroys the villi lining of the small intestine.  Those villi make the lactase enzyme we need to digest dairy. Sigmoid colon thickening could be related to diverticulitis.  Which according to Wiki is a fairly common condition but doesn't always cause symptoms.  Diverticulitis can cause a problem if there is an infection though.  The sigmoid colon is part of the large intestine.  Celiac disease affects the small intestine, so celiac isn't likely involved.  I am not sure why the resident suggested celiac, unless there were some other reason to do so.  Possibly the weight loss, which could be explained by celiac disease.  Thickening of the colon may happen with Crohn's disease also.  And I'm not sure about UCD (ulcerative colitis disease) but it might cause that also, not sure https://en.wikipedia.org/wiki/Diverticulosis https://en.wikipedia.org/wiki/Sigmoid_colon http://biology-pages.info/G/GITract.html#pancreas http://www.ccfa.org/what-are-crohns-and-colitis/what-is-ulcerative-colitis/
    • So I've been glutened....
      Hi JMG, Since it's easy, and always fun, I'd blame your sister. That's what I do.  But seriously, if it's an ongoing problem, rather than an isolated incident stick with your first guess.  Then test it.   So get rid of the oat bread or the sister (her food) or anything that is a consistent part of your diet and you suspect could be the problem.  Of course processed foods are the most likely issue always. It's easy enough to drop back to a very few foods for a few days and see if things improve.  Eating with celiac isn't about having the most exciting diet, it's about eating a medically safe diet.  So it can be boring sometimes.  That's ok, being in pain is exciting but not so fun.   Boring is fine. You might ask your sister what brands of flour she used, and other ingredients.  Then check on those products for possible gluten issues.  If they turn out to be possible problems, make a note of it so you can avoid them in the future. My own sister has been gluten-free for years but she has made me sick several times with her "creations".  It really is best to trust your own cooking and nobody else's for at least 6 months as you are getting used to the diet and healing.  Then slowly branch out and add things in maybe 1 new item in a week.  Slow and controlled diet changes are the way to go.  Boring but safe.  Happy but slow.    
    • So I've been glutened....
      Jmg I am sorry to hear you are unwell. You have been so kind and helpful to me on the boards here. You deserve the time to rant too.   Everyone's suggestion of probiotic is helpful. I have taken them since the 1990's in spurts as needed but was told by my DC after this March glutening I should take it daily "for life". My local store ran out, (I buy the type that must be refrigerated so the manufacturer does not ship direct to customer.) I was ok first day without it but by day 3 I knew I had to locate some for the probiotic/ enzyme blend was necessary for me. I have still not healed well enough yet to be without. As others said it could be cc from sis or the food  industry. Within the food industry even with parameters in place errors can be made- hopefully not too often.  Often rare though especially if not designated facility.  It is hard to know some days what it was. I do hope you get better soon. Yes I do think it can affect the brain/mood. Happens to me a large amount can be immediately,  but a smaller amount by day 2 after glutening. I want to ban gluten everywhere in my environments, unrealistic I know,  but have only been able to do that at home.  Be kind and patient with yourself at this time as you would tell me. ((((((Hug)))))
    • So I've been glutened....
      Yeah I did all the bone broths and sauerkraut after my challenge. Although I wasn't very good at making sauerkraut... Its summer here now so I've eased up on the bone boiling, plus my local butcher is struggling to obtain them. As you say healing to the point where microscopic cross contamination doesn't get you would be a big win.  I was ok with coffee until last few days. I drank decaff black and would have several cups a day without issue. I'll be gutted if I can't handle it any more. I hadn't realised you could get gluten-free miso soup. Will have to look for that    
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