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sandyg

New Gi -- Is He Missing Something?

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Hi All,

I was diagnosed 1 month ago during an anemia work-up. My EGD showed total villous atrophy and a transglutaminase IgA level of 254! So, today I met a new GI (closer to home). I'm concerned about what other vitamins/minerals I could be lacking. I know that I have a ferretin level of 5 and that my iron is low at 18.

Well, this doctor said that I didn't need any further labs or testing. He told me that I'm young (33) and appear healthy so my villi would recover in 2-3 months. I thought this process took years?! He didn't reccommend any vitamins or supplements. . . All he wants from me as a repeat transglutaminase IgA in 6 months with the strict diet, of course. He also offered a repeat EGD in 1yr.

I'm feeling like this visit was a waste time and money. Any thoughts?

Sandy

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If you stick to a strict gluten free diet, yes, chances are your villi will return to normal much closer to "months" than "years." Not to say that it doesn't take longer for some. Your villi may return to normal but it may take a little while longer to feel better.

From: http://www.celiaccenter.org/faq.asp

Are the villi permanently damaged in a patient with Celiac Disease and how long does it take for the villi to return to normal?

The villi are not permanently damaged. The intestine is an organ, which renews itself every three days. Therefore, if the damage is exclusively due to celiac disease, the villi will be reformed once on a gluten-free diet. The time for the villa to return to normal varies between individuals.

I recommend the book listed in my signature by Dr. Peter Green, another leading authority on Celiac.

from <a href="http://www.celiacdiseasecenter.columbia.ed...nts/A02-FAQ.htm" target="external ugc nofollow">http://www.celiacdiseasecenter.columbia.ed...nts/A02-FAQ.htm</a>

Q: I've just been diagnosed with celiac disease. How soon will I feel better?

Most patients respond rapidly to a gluten-free diet and will often report an increased feeling of well-being. How well they feel, and how quickly, may vary depending on the nature, severity and duration of symptoms prior to diagnosis. There may also be some "ups and downs" as they work toward the goal of eliminating all gluten from their diet. There is usually a learning curve to finding what food, drink and drug products are safe and which contain gluten.

This is a good link for "follow up" after diagnosis. <a href="http://www.celiacdiseasecenter.columbia.ed...-Management.htm" target="external ugc nofollow">http://www.celiacdiseasecenter.columbia.ed...-Management.htm</a> I would either talk to your doctor about these issues of find another doctor that is willing to discuss these with you.

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If you stick to a strict gluten free diet, yes, chances are your villi will return to normal much closer to "months" than "years." Not to say that it doesn't take longer for some. Your villi may return to normal but it may take a little while longer to feel better.

From: http://www.celiaccenter.org/faq.asp

Are the villi permanently damaged in a patient with Celiac Disease and how long does it take for the villi to return to normal?

The villi are not permanently damaged. The intestine is an organ, which renews itself every three days. Therefore, if the damage is exclusively due to celiac disease, the villi will be reformed once on a gluten-free diet. The time for the villa to return to normal varies between individuals.

I recommend the book listed in my signature by Dr. Peter Green, another leading authority on Celiac.

from <a href="http://www.celiacdiseasecenter.columbia.ed...nts/A02-FAQ.htm" target="external ugc nofollow">http://www.celiacdiseasecenter.columbia.ed...nts/A02-FAQ.htm</a>

Q: I've just been diagnosed with celiac disease. How soon will I feel better?

Most patients respond rapidly to a gluten-free diet and will often report an increased feeling of well-being. How well they feel, and how quickly, may vary depending on the nature, severity and duration of symptoms prior to diagnosis. There may also be some "ups and downs" as they work toward the goal of eliminating all gluten from their diet. There is usually a learning curve to finding what food, drink and drug products are safe and which contain gluten.

This is a good link for "follow up" after diagnosis. <a href="http://www.celiacdiseasecenter.columbia.ed...-Management.htm" target="external ugc nofollow">http://www.celiacdiseasecenter.columbia.ed...-Management.htm</a> I would either talk to your doctor about these issues of find another doctor that is willing to discuss these with you.

Thanks for the links! I'm interested in a bone density test since I have never really consumed enough calcium, but maybe I can just assume I'm calcium deficient and start taking a supplement or at least a multivitamin. I don't really want to hear that I have osteopenia at 33 anyway :rolleyes: Now I just need to find some gluten free vitamins. . .

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SandyG,

I recommend the bone scan. My back started curving down when I was in my 30's. I had no treatment or recommedations. I am now 59. I asked for the bone scan and I am already a -3.5. Treatment now can prevent what happened to me. It is treatable.

Susan


Dairy/Cesain free Oct. 2005

Gluten free June 2006

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Yes, have the bone scan. I had no clue that I had osteopenia until I had one even though I have had several broken bones over the years. ;)

I have 3 toddlers and finding child care so I can go to appointments alone is never easy. . . I'm wondering what happens if I skip the bone scan and just start taking calcium supplements. Is there any harm in that? How much calcium do they reccommend? Or is it important to have a baseline scan? <_<

Sandy

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I would be nervous going without a bone scan if you think you might have the beginning stages of osteoporosis. If you do have low bone density your doctor might recommend you take something like boniva or fozimax to increase bone density instead of just calcium.

You could ask for just the ankle bone scan - you should be able to take the kids to that. You put your foot in this little machine and it takes a minute or two. It's not as accurate as a full body bone scan, especially since the ankle tends to have higher bone density than the rest of the body since that bone bears a lot of weight, but it would at least give you an idea if there's a problem.

Another way to increase bone density is weight lifting or cardio like running. Bones need to have weight placed on them to increase in density.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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I have 3 toddlers and finding child care so I can go to appointments alone is never easy. . . I'm wondering what happens if I skip the bone scan and just start taking calcium supplements. Is there any harm in that? How much calcium do they reccommend? Or is it important to have a baseline scan? <_<

Sandy

Sandy a baseline would be ideal. If you have been breaking bones it would be needed without a doubt but if you haven't waiting for a scan may not be the end of the world. If there is no way to get a baseline scan then at least do what you can to strengthen the bones until you can. Get a good supplement for calcium and vitamin D and make sure you get a good deal of weight bearing excercise. I have osteoporis and after researching the meds I refused them, the side effects are to dire for me. I need a great deal of dental work, (if I can ever find a celiac savvy dentist), and with a couple teeth that will have to be pulled the drugs are not worth the risk, for me. I have now been gluten-free for 5 years and at my last scan two years ago it had not progressed any farther. I am hoping on my next scan to have maybe gained a little ground but we will have to see.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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