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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Vitamin Deficiencies Once On The gluten-free Diet?
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Hi all, it's been about seven months since I got my Celiac diagnosis and started my gluten free diet. I thought I was eating well, avoiding most processed foods and cooking for myself, with plenty of vegetables and lean animal proteins. My gastro symptoms virtually disappeared, and I expected that my gut must slowly be healing and my vitamin absorption increasing. But recently, I noticed that my thumbnails have become all ridged, with these deep horizontal grooves. They appear to be Beau's lines - a sign of malnourishment, serious illness, and some vitamin deficiencies, and they cover most of the nail, so they must have started about five months ago. I've also noticed that my nails have become much weaker and are peeling off, and my hair may have even thinned out a bit as well. I have to say, I was pretty thrown off to realize that even though I thought I was eating so healthfully, I now have more outward signs of vitamin deficiencies than I did when I was an undiagnosed Celiac with constant gastro symptoms.

 

Did anyone else have this experience of the gluten-free diet leading to greater vitamin deficiencies or new external signs of malnourishment? I've been to see a dietitian and am waiting for her recommendations (all she said so far was to eat more rice). Hopefully she can help me pinpoint the nutritional gaps and fix them. I know vitamin deficiencies are a normal part of coping with Celiac, but shouldn't indicators be getting better rather than worse? Up until now, I had been pretty positive, feeling like Celiac was totally manageable as long as I just ate gluten-free and healthy. But I have to say, this has shaken my confidence in how much of my health I can control through good decisions and a healthy lifestyle.

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I also have some problems. I think it is a while in the making tho. I have lost one toe nail and another is falling off, I have the rash on my back and my hair ughhh falling out and not the shine it used to have. But I think would be worse if I wasn't on a Gluten Free diet. Ittakes time for the Villi to heal just take some good vitamins. You can have a test done to see what vitamins your lacking or falling short of. Good luck... :) 

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My absorption seemed to take a dip after going gluten free.  My iron level had been okay with supplements, but it lowered.  I had a nutrient absorption test at round 8 months gluten free.  My vitamin B levels were low.  Vitamin D was low.  My ferritin level was low. This in spite of many supplements I was on.  The Genova nutrient test also found I had mal-absorption.  No wonder those supplements were not registering like they should.

 

I changed a couple of things after that first nutrient test.  I added digestive enzymes and a supplement for adrenal support, and I took IgG to help heal my gut.  I also removed all foods and spices which I had antibodies to.  I stayed 6 months more gluten free.

 

This June (Just over a year gluten free) I did a Sp ectra Cell test for nutrient absorption.  The vitamin B levels had risen to good.  The other nutrient levels were adequate, but for one that was on the brink of inadequate.  I am elated, and I feel better besides.

 

One can't control everything.  However, if you keep walking in the right direction, you ought to get somewhere.  Hang in there, do what you have to do and Get Better.  ***

 

D

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Thanks for your responses guys. D, that's really great that your levels have rebounded after initially getting worse and that you are feeling better. It's certainly reassuring as well, if you too had a nutrient dip originally on the diet and then have turned it around. Everyone says healing takes time, and I don't mind being patient, I just want to make sure I'm doing everything I can to make myself better.

 

Are digestive enzymes like probiotics or do they act differently? I've just bought probiotics for the first time, as well as some vitamin B12 and D supplements, so hopefully those will help. I thought my GP had tested my vitamin levels at my June appointment, but either she didn't, or never sent me the results (I've written her now to request them). She had sent me the results of the blood count tests, which seemed normal, a follow up Celiac antibody panel (all still positive, but lower values I think), and iron tests. Aside from the Celiac panel, the only thing that seemed abnormal there was a very low ferritin level, just within the bottom end of the normal range.

 

I'm not familiar with the nutrient absorption tests you mention. Are those different from just checking your vitamin levels? Are they tests your doctor will order or do you have to do them through a private company? Also, how did you know what foods and spices you had antibodies to?

 

W8in4dave, I'm sorry you are having issues as well. Being relatively new on this diet, I guess our bodies are still adjusting. You may be right that the deficiencies have been a long time in the making and maybe it's just a coincidence that the fingernail grooves and other manlnourishment symptoms started soon after my gluten-free diet did. I certainly can't imagine what major vitamins or minerals I'd suddenly be missing just because I cut out tortillas and whole wheat crackers!

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Thanks for your responses guys. D, that's really great that your levels have rebounded after initially getting worse and that you are feeling better. It's certainly reassuring as well, if you too had a nutrient dip originally on the diet and then have turned it around. Everyone says healing takes time, and I don't mind being patient, I just want to make sure I'm doing everything I can to make myself better.

 

Are digestive enzymes like probiotics or do they act differently? I've just bought probiotics for the first time, as well as some vitamin B12 and D supplements, so hopefully those will help. I thought my GP had tested my vitamin levels at my June appointment, but either she didn't, or never sent me the results (I've written her now to request them). She had sent me the results of the blood count tests, which seemed normal, a follow up Celiac antibody panel (all still positive, but lower values I think), and iron tests. Aside from the Celiac panel, the only thing that seemed abnormal there was a very low ferritin level, just within the bottom end of the normal range.

 

I'm not familiar with the nutrient absorption tests you mention. Are those different from just checking your vitamin levels? Are they tests your doctor will order or do you have to do them through a private company? Also, how did you know what foods and spices you had antibodies to?

 

W8in4dave, I'm sorry you are having issues as well. Being relatively new on this diet, I guess our bodies are still adjusting. You may be right that the deficiencies have been a long time in the making and maybe it's just a coincidence that the fingernail grooves and other manlnourishment symptoms started soon after my gluten-free diet did. I certainly can't imagine what major vitamins or minerals I'd suddenly be missing just because I cut out tortillas and whole wheat crackers!

Probiotics are different from the digestive enzymes given to me by my functional medicine nurse practitioner.  .She realized that I had villi damage.  The villi in the small intestine tell the pancreas when to fire.  Since mine were damaged, they couldn't do their job.  The enzymes help to break down the food while one waits for healing.  Probiotics are bacteria that helps the body break down food in the intestines.  I do use both.  My son received a prescription from an Osteopathic doctor for digestive enzymes when he had villi damage.  The prescription was covered by the insurance.  The good news is that the villi damage is reversible and then you have no need for the extra enzymes.  You can purchase digestive enzymes at a health food store.

 

You could ask an MD about the nutrient tests I mentioned.  However, an alternative doctor or someone experienced with them may able to advise you on how to proceed.  The test checked nutrient levels for perhaps 100 nutrients.  That is my guess, there were a lot.  Medicare now covers most of the test cost.  That means my private insurance and some others will cover it.  I just realized you may not be in the US.  I don't know if other countries have it.  A functional Medicine doctor may do them.  It is a relatively new test and this year had been accepted by insurance companies here.

 

I got IgA and IgG tests for antibodies to foods and spices.  My test was by Genova lab.  Many people here don't trust these tests, but it worked well for me.  I had antibodies to most foods I was eating.  I took a break from those foods and began to feel better.  There were certainly a lot of factors involved in my recovery.

 

I know very well that feeling of wanting some objective way to find out you are getting better.  I really liked the nutrient testing route.  If my body wasn't get what it needed for nourishment, but now it is, I am healing!

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Thanks for the explanation, D. It's true I'm not living in the U.S., but I have U.S. insurance and my doctor, who is an Osteopath, is there. I'll ask her about nutrient testing when I visit at Christmas. She doesn't have a deep knowledge of Celiac, but to her credit she is the one who suspected and tested for Celiac when I thought that was the least likely explanation for my issues, and she has always been very receptive to my requests for bloodwork tests, etc. I can ask her about nutrient testing and if she thinks I need enzymes when I see her next. It's just a shame that won't be for another few months yet.

 

Well done for taking matters into your own hands, getting the tests, and figuring out the best route of healing for you.

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