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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 Celiac.com's FREE weekly eNewsletter   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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Blood Test Results
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So according to my test results I am negative for celiac but.... I am very low in iron. This surprised me very much as although I don't eat meat (I do eat fish) I am a bit of a health nut, and eat masses of green leafy veg, dried fruit (all the high iron ones like raisins, figs, prunes etc) beans such as soya beans and kidney beans and I take multivitamins and use protein powder which also is loaded with added vitamins and minerals.

The doctor has put me on iron pills - according to the bottle the 'normal dose' to treat anaemia is 2 tablets per day, I have been put on 3 per day! It's not like I am large, or heavy, I am 5ft 2" and wear a UK size 6 clothes! so there is not much of me to need a bigger than normal dose.

I have to go back in 3 months for another blood test to see if that has fixed the problem.

I was also given some info on Irritable bowel syndrome and some Colpermin capsules to try, for my stomach/bowel symptoms.

The thing is I don't know now whether to go back to being gluten free now or to wait until after the 3 months on iron, because if I stay on gluten and taking the iron does not resolve the problem (if it is an absorption issue), then it gives a genuine picture of things. However if I take the iron AND go gluten free at the same time, then the doctor will just put the improvement down to taking the iron alone.

It also is nagging at the back of my mind that I had gone gluten free for a week or so, and did a 6 week gluten challenge before the blood test, and I worry that maybe I had not eaten enough gluten...as the first thing my doctor asked was if I had been eating gluten at the time of the test.

I don't have the actual results (as UK GPs are not generally happy about actually handing over the numbers).

My feeling at the moment is just to take the iron (and colpermin) and see what happens to my iron level. It would perhaps explain why |I have been feeling even more exhausted than normal!

Has anyone else had similar results/ low iron etc?

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Did you have an endoscopy or just bloodwork? I know someone that had very low iron due to an ulcer that was found via the endoscopy. She also tested negative for celiac.

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You won't have thrown the bloodwork with only a week gluten-free and the six weeks back eating gluten.

As Christine says, you probably need an endoscopy and biopsies. Idiopathic low iron can be caused by celiac and the bloodwork has about a 20% chance of false negatives.

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Thanks for your replies....

It was just bloodwork which was negative. There has been no suggestion of a follow up endoscopy.

With regard to ulcer... actually my mum was found to have low iron last year, it turned out to be due to an ulcer which turned out to be cancer (inoperable- and now terminal) So I would be lying, if that was not at the back of my mind!

I guess all I can do just now is wait and see if the iron pills change anything when I get re-tested in 3 months. If it does nothing then obviously there is another issue, if the iron fixes the problem, then I will just need to be much better with my diet than I though I had been, and really make sure I load up on iron rich foods etc, as there is no way I am going back to eating meat!

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Thanks for your replies....

It was just bloodwork which was negative. There has been no suggestion of a follow up endoscopy.

With regard to ulcer... actually my mum was found to have low iron last year, it turned out to be due to an ulcer which turned out to be cancer (inoperable- and now terminal) So I would be lying, if that was not at the back of my mind!

I guess all I can do just now is wait and see if the iron pills change anything when I get re-tested in 3 months. If it does nothing then obviously there is another issue, if the iron fixes the problem, then I will just need to be much better with my diet than I though I had been, and really make sure I load up on iron rich foods etc, as there is no way I am going back to eating meat!

With a family history like that...I'd ask for an endoscope. I was one of the 20-30% that tests negative on blood tests. An ndoscope showed severe damage. If I had stopped at the blood test results..who knows what might have happened?

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You are right about my family history, I think the same too, I would add that my daughter sometimes displays symptoms which could be gluten related too.

Am I right in thinking that if there is damage, that the iron pills won't help if absorption will be an issue?

At the moment I am thinking that if the iron does not help then I will have good reason to ask for further testing....

I hate being in this position, as I already have a few health issues, and just feel like I a trying to find another one! My doctor is pretty good, but sometimes I do wonder if she thinks I sit at home looking up things to find wrong with myself!, as I am unfortunate in having M.E (C.F.S) which is one of those things which can't actually be 'proved' by a medical test other than elimination of other things, Ehlers Danlos type lll (hypermobility) and (reactive) depression as a result of living with the pain and limitations of the other 2 conditions.

So, pushing for further investigation just feels like I am looking for another condition to add to my collection as it were (although she has already added IBS!) but if the iron does not work I would have a reason to ask for further investigation....

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You are right about my family history, I think the same too, I would add that my daughter sometimes displays symptoms which could be gluten related too.

Am I right in thinking that if there is damage, that the iron pills won't help if absorption will be an issue?

At the moment I am thinking that if the iron does not help then I will have good reason to ask for further testing....

I hate being in this position, as I already have a few health issues, and just feel like I a trying to find another one! My doctor is pretty good, but sometimes I do wonder if she thinks I sit at home looking up things to find wrong with myself!, as I am unfortunate in having M.E (C.F.S) which is one of those things which can't actually be 'proved' by a medical test other than elimination of other things, Ehlers Danlos type lll (hypermobility) and (reactive) depression as a result of living with the pain and limitations of the other 2 conditions.

So, pushing for further investigation just feels like I am looking for another condition to add to my collection as it were (although she has already added IBS!) but if the iron does not work I would have a reason to ask for further investigation....

I had severe damage and they put me on iron pills. I guess they're hoping for a patch of villi that might grab it? It's been slow to resolve in me, which is pretty normal I guess.for all anemics? If you're waiting until future blood tests show you're not absorbing the iron, it may take a while I think?

I know you have other issues, and may worry that you'll be pegged as a hypochondriac? I'd ask for the scope anyway. The IBS, anemia, family history, and other illnesses should be enough to justify the reason for a scope?

Maybe if you took a print out to the Dr. about causes for anemia, it would make a better case for further investifgation?

http://www.webmd.com/a-to-z-guides/understanding-anemia-basics

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I had severe damage and they put me on iron pills. I guess they're hoping for a patch of villi that might grab it? It's been slow to resolve in me, which is pretty normal I guess.for all anemics? If you're waiting until future blood tests show you're not absorbing the iron, it may take a while I think?

I know you have other issues, and may worry that you'll be pegged as a hypochondriac? I'd ask for the scope anyway. The IBS, anemia, family history, and other illnesses should be enough to justify the reason for a scope?

Maybe if you took a print out to the Dr. about causes for anemia, it would make a better case for further investifgation?

http://www.webmd.com...g-anemia-basics

Thanks for that Bubba's Mom, certainly very informative reading. I have to be re-tested in 3 months, so that will show if the iron has made any difference. I guess I have waited this long, I can wait a bit longer....It took me years to get diagnosis of the other things I have, so I guess I am used to the whole process of going through banging my head against a wall for a long time first :) but I will definitely push the point if the iron issue has not resolved at my next appointment based on the article you kindly found, so thanks very much for that.

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