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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.

Celiac Disease And Anemia?
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7 posts in this topic

I have not officially been diagnosed with Celiac Disease, had the classic symptoms and I am feeling somewhat better on a gluten free diet. I have, however, been diagnosed with Iron Deficiency Anemia. I am wondering how long it should take for my intestines to heal enough to be able to reap the benefits of an Iron supplement. It doesn't seem to matter if I take a supplement, get it naturally from my diet, but I still feel weak, dizzy, tired (12+ hours of sleep later) and am getting weaker by the day as it seems my body isn't getting any of the iron it needs. Does anyone else suffer from both Celiac and Anemia? How long did it take you to feel better?

P.s. I know that I should see a doctor, I also know that without testing there is no guarantee that I have celiac disease, etc.

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Iron deficiency anemia isn't the only thing that can make you feel weak, dizzy, and tired... Other common causes include hypothyroidism and deficiencies in vitamins like D and B-12 (pernicious anemia). Someone with celiac disease can have all of these conditions at the same time :blink:

Everyone is different when it comes to healing. It depends on your age, how careful you are about cross-contamination, how much damage there was, what kind of damage there was, etc... Some of the neurological symptoms (neuropathy, ataxia), for example, can take a long time to go away. It only takes a few weeks on a gluten-free diet to get a negative result on a celiac blood test.

IMO, a good place to start now would be a CBC and a CMP. You could also try vitamin D on your own. I found this website helpful (http://vitamindcouncil.org/). I know it can be tricky to find a good doctor :( I had one who told me that "fatigue is common with a lot of autoimmune disorders" (which is true), so "I better just get used to it" (WRONG). I didn't go back to him again.

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Thanks for the info! I know that I don't have thyroid problems, I was tested for them less than three months ago. It is definitely possible for me to have vitamin deficiencies. Because I'm already on a gluten free diet, I know that a blood test will likely come back negative. I am thinking about the possibility of doing the enterolab testing. Does anyone else know about this and how it works? Did it work for you? As far as cross contamination goes, it would be very unlikely. I do almost all cooking in my home, don't eat any foods that could have come in contact with gluten, and my entire family is gluten free, so the likelihood of cross contamination in my home is VERY minimal. I have been VERY careful about ingredients, etc. I'm guessing depending on the kind of damage you are right... do you know how long it can take those symptoms to go away? Months? Years? Hopefully months :) I want to feel better!!!! Of course, I don't know how much damage there was, and I'm hoping that some testing can enlighten me on that.

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Hi and welcome! :)

I had iron deficiency anemia before I was diagnosed--it was mild for years and years and in the year before I was diagnosed it worsened to the point where I couldn't even stand upright for very long. I took suppliments, and although they made me ill, they weren't very much help.

For me (and it different for everyone), it took about 6 months. Pre-diagnosis, my hemaglobin was 8, and 6 months later, it was 14.6. It was so nice when it finally resolved--I had it for so long that I had pretty much forgotten how it felt to not feel dizzy when I got out of bed in the morning! :P

Anemia is a very common symptom of Celiac. If your villi are damaged and they begin to heal on the gluten-free diet, hopefully the anemia will begin to improve. Hope so :D

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I am anemic as well. I found out in early december. The doctor scared me to death, telling me I was on the edge of needing a bloodtransfusion. Then he told me what to eat (lentils, spinach, liver) and put me on a very high dosis of ironpills which made me sick, so I switched to intramuscular injections which I get weekly from my GP. Then I went to a GI for second opinion on possible celiac and he said the injections aren't enough to get it back up, so I'll probably get IV at hospital weekly now. I'm waiting for the blood results to see how much of the injections I've acutally taken in.

So, what you need, depends on how anemic you are and how well you cope with the pills. But please go to a doctor, because if it's serious, you cannot get it back up 'just' with the right food and pills because you only take in a part of that. You need more.

I know how it feels, I wake up to a bloodtaste in my mouth every day and although I'm 23, I can't work because I need to sleep 12 hours and rest during the day. I thought I had cfs so I'm actually very happy I have a condition that is treatable... so I'd go and get that treatment if I were you!

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I am in the process of iron injections myself. I have had three of five and WHOA, I noticed a HUGE difference in how I felt afte the second one. I have been gluten-free since last may and the iron seems to be my nemesis. It was going up with oral iron but EVER so slowly. I haven't had the blood work yet but I can tell its gotten way higher.

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Getting my iron up was the hardest thing for me to do.... My ferritin was all the way down to TWO! But after my diagnosis and going 100% gluten free (not almost gluten free...it won't work), my iron shot WAY up. (And in two weeks! Not common if you visit the iron deficiency forums) And this is after years of trying to get my iron up with iron supplements *three times* per day! Now, I am only taking it once a day and Floravital (made by flouradix--reg. flouradix has gluten). It's expensive, but it's really a life saver for me. It's iron and B complex. I tolerate and absorb the liquid much better even though it's a small dose.

How long have you been gluten-free? My blood work was negative because I had gone off gluten before testing, which is a bad idea. You must be on gluten for tests to show it. My biopsy was positive, but my doc almost didn't do it because my tests were neg.

I have not officially been diagnosed with Celiac Disease, had the classic symptoms and I am feeling somewhat better on a gluten free diet. I have, however, been diagnosed with Iron Deficiency Anemia. I am wondering how long it should take for my intestines to heal enough to be able to reap the benefits of an Iron supplement. It doesn't seem to matter if I take a supplement, get it naturally from my diet, but I still feel weak, dizzy, tired (12+ hours of sleep later) and am getting weaker by the day as it seems my body isn't getting any of the iron it needs. Does anyone else suffer from both Celiac and Anemia? How long did it take you to feel better?

P.s. I know that I should see a doctor, I also know that without testing there is no guarantee that I have celiac disease, etc.

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    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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