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Elaine40

Anemia And Celiac

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My 17 year old daughter has iron deficiency anemia. Her hemoglobin has been slowly going down, from 9.9 to 9.3 then today to 8.5. She has been on iron pills for the past few weeks and it still went down. The doctor is suspicious of celiac given the family history of gluten intolerance (I have not been diagnosed but have been gluten free for about six months or so and other family members have a lot of trouble with wheat as well).

Her white count has also been going down from 4.1 to 3.5 to 3.1.

Has anyone experienced this with celiac.

She will be tested further for celiac by blood (I thought she was a few months ago but she only had the gliadin done, not all of them apparently, and that was negative). Then we will probably do a biopsy.

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My 17 year old daughter has iron deficiency anemia. Her hemoglobin has been slowly going down, from 9.9 to 9.3 then today to 8.5. She has been on iron pills for the past few weeks and it still went down. The doctor is suspicious of celiac given the family history of gluten intolerance (I have not been diagnosed but have been gluten free for about six months or so and other family members have a lot of trouble with wheat as well).

Her white count has also been going down from 4.1 to 3.5 to 3.1.

Has anyone experienced this with celiac?

She will be tested further for celiac by blood (I thought she was a few months ago but she only had the gliadin done, not all of them apparently, and that was negative). Then we will probably do a biopsy.

I've had a gluten problem for 42 years, but not one doctor in all that time checked for it. I had to figure it out myself when my symptoms started getting worse and worse. I even told my doctor how short of breath I was and asked if I should have a stress test, but she just kind of blew me off. Is your daughter short of breath? That's a key symptom of anemia from what I understand.

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Is your daughter short of breath? That's a key symptom of anemia from what I understand.

Well, the reason we took her to the doctor in the first place was because she was very tired and always really cold. She has not complained of shortness of breath.

How were you treated for your anemia? Are you feeling better now?

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I can totally relate to this! I am 17 also and my anemia was so low I had to have iron IV treatments because the same thing happened to me, except I had problematic periods. Does she...are they heavy? That was a problem at first, but then it was just unexplained anemia because I hadn't had me period for 6 months and was still really anemic. Longggggg story short, I ended up going gluten free and my anemia has almost completely gone away. It took us an entire year to get my iron saturation from 10 to 11. Normal is 20 plus...when I went gluten-free, in 6 weeks it went to 28!!!!!! My hematologist was AMAZED! I would definitely get her tested and make sure she is on gluten while she gets tested! If you want more info about my anemia journey, you can PM me or email me. I would be more than happy to share. Also, make sure she is taking B12 and Folate and Vitamin C is helpful. Folate is crucial to absorbing iron.

Kassandra

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Well, the reason we took her to the doctor in the first place was because she was very tired and always really cold. She has not complained of shortness of breath.

How were you treated for your anemia? Are you feeling better now?

I was not treated for my anemia. I put the pieces together after I went gluten free and started reading about gluten and anemia. The other day I was working out and was just amazed at how much more endurance I have now. I used to get short of breath very easily, but I was on the exercise bicycle for 25 minutes and did fine.

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Met a young woman in my support group last year. Said that she had been diagnosed as anemic. Doctors gave her massive doses of iron. No help. (In her words she said it almost killed her) Had to go to Duke University to get diagnosed with Celiac. After going on the gluten free diet she was fine. (Must have been the malabsorption=deficient part of the equation early in the treatment that had the doctors confused)

Tom

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I've always heard oral iron supplements can be hard on a compromised digestive system. If she's not responding to oral treatment, she should ask her doctor about iron IV infusions. I don't have a firm diagnosis, but at my sickest, I was very anemic. IV treatments got me back on track.

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The only thing with the IV's is that if celiac is the problem, she needs to be gluten-free when she gets them. In my experience I had them while I was still eating gluten, and my numbers went down REALLLY fast after having the IV's. Once I went gluten-free, they came up. My hematologist told me I would need another set of them. You can also try to make sure her Iron supps are gluten-free. I could never tolerate iron and it turns out, it's not the iron, it was the gluten. But iron is really harsh on stomachs.

Kassandra

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The only thing with the IV's is that if celiac is the problem, she needs to be gluten-free when she gets them. In my experience I had them while I was still eating gluten, and my numbers went down REALLLY fast after having the IV's. Once I went gluten-free, they came up. My hematologist told me I would need another set of them. You can also try to make sure her Iron supps are gluten-free. I could never tolerate iron and it turns out, it's not the iron, it was the gluten. But iron is really harsh on stomachs.

Kassandra

Thanks so much for all the helpful info. The first set of iron tablets were hard on her stomach - she was not constipated but she woke up cramping in the middle of the night. She has switched her to something with more of a coating on it so hopefully they will be better. The thing with my daughter is that she does not have a lot of stomach issues in relation to all this, so I'm not 100 percent convinced it is celiac, although the hematologist said that she has had people who had no symptoms of celiac and were diagnosed through being anemic - and then realized after being gluten free that they felt much better.

Kassandra - that is so interesting about your counts going down with IV infusions. Did your hematologist say why? Did you actually have a blood transfusion? I wonder if gluten can be carried through into the blood, if you get an IV blood transfusion from someone who eats gluten.

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My 17 year old daughter has iron deficiency anemia. Her hemoglobin has been slowly going down, from 9.9 to 9.3 then today to 8.5. She has been on iron pills for the past few weeks and it still went down. The doctor is suspicious of celiac given the family history of gluten intolerance (I have not been diagnosed but have been gluten free for about six months or so and other family members have a lot of trouble with wheat as well).

Her white count has also been going down from 4.1 to 3.5 to 3.1.

Has anyone experienced this with celiac.

She will be tested further for celiac by blood (I thought she was a few months ago but she only had the gliadin done, not all of them apparently, and that was negative). Then we will probably do a biopsy.

Hi, I know you have already received many great responses, but I thought I'd respond anyway. Prior to going gluten free, I wasn't even aware of what celiac was. Many, many people in my family are anemic and have trouble taking iron. My mom used to say it just builds up in our intestines and we don't absorb it-- and apparently she was right. I was very anemic and this was my primary care physician's main concern. She ordered complete iron studies and the endoscopy/colonoscopy because she wondered if I was bleeding internally and causing the severe anemia. (I NEVER had trouble with my periods - except pain-- and they are really short and not heavy, so I ruled this out myself). My endocopy results, before any biopsy was back, stated "no explainable reason for anemia". Then I figured it all out on my own and went gluten free. My doctor ordered Iron supplements at a huge dosage. I didn't take them, because Iron always made me sicker. I mean, if you're not going to abosorb them, why bother! And only after about 2 months of being gluten free my numbers went up! Still anemic, but they improved a lot. I figured that once I began healing, I will try to supplement with iron rich foods and see how that goes, then try iron supplements again. Hope this helps you.

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I never had Blood transfusions...too risky. I had Iron IV's. It was called Ferrlicet (the iron.) Since I was still eating gluten at the time of the IV's, my body still wasn't absorbing the iron because the blunted villi from Celiac. My body wasn't able to absorb. If she needs IV help, I would try the Iron first before blood because there are risks, unless of course a family member can donate blood. But me hematologist told me that my hemoglobin had to be below 5 for blood! It was at 8.2 and my ferritin was NOTHING and he wouldn't give me blood. lol. I was considered 'severely" anemic and he wouldn't do blood. There is an iron supplement that my mom could handle called ferrous sulphate and that's what my dr. recommended to me. You may want to try that also. I would strongly suggest getting her tested though.

Kassandra

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Hi all,

Prior to my diagnosis of celiac going on two years, I was quite anemiac for years. Had all different kind of tests, the iron tabs which they said were the best, yeah right. I even had a hysteroscopy and an exploritory to which the doctor then said well you have endometreosis. I do not have this doc anymore. So I was then placed on the pill continually which was new way back then. My energy came back some, not as much blood loss and still had symptoms at times. After having my gall bladder out and having several more tests, one of which was a biopsy and blood tests for celiac, I was told by a different doctor that I did not have endometreosis and so on and so forth. Life is just full of doctors that know all, huh? Even after those tests and being told you will dramatically impove health wise, which I still havent, I now am taking vit b12 shots. They say usually the elderly get these and even though my kids will say I am elderly, I am not quite 40 (kids are cute aren't they) and have since found this runs in the family (celiac and hereditary) as well. So if you can get you doc to check for vit b12 this may help with the energy level. It has some for me, still trying to keep active without wanting to take a nap all day long.

Good luck.

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I have a problem with anemia and coeliacs disease with my 5 year old daughter. She became anemic when she was 3 (nearly 4). We took her to the docs and she was having iron medicine but was still very tired and very pale. One of the times I went I begged with the doc to check everything on a blood test because I was sure there was something wrong (Iever since she was a few months old I had been regularly taking her to the docs and hospital because she was having severe stomach cramps, even a specialist childrens doc and they all said it was 'just wind' or that she was consitpated even though she went to the loo fine!!!). Anyway the tests came back and the one that signifies celiac disease came back as 300 (I think it was meant to be 20/30). So she went and had a biospy which confirmed she had (and prob all her life had) coeliacs. She was still anemic at the time and was on liquid oral iron. She kept going back for tests for her iron levels and they seemed to go up but she was still so tired. I had hoped going on to the gluten-free diet would solve all her problems, but they persisted. So the doc said he would do an 'investigation' blood test. This shows the actually amount of iron in her blood apparntly and not the superficial level the iron level was masking. I think it was the ferritin in the blood??? Anyway at the beggining of this year it was 9 (it should be between 13-30), and we carried on with the iron medicine. She's recently had another blood test and the ferritin has come back as 6!!!! This is desperatly low for a 5 yr old!!! And she has been on the oral iron medicine for over a year!! All the doc would say is 'well some people just dont absorb iron' but I dont feel thats a good enough reason. There must be a reason she is not absorbing it, this problem is continually getting worse and not better so there must be a reason for it. He said that she is obviously not absoring iron orally well so she will have to have, what he called, a booster injection. Apparelty an injection of everything (I assume he means vits and mins as well??). Now we have to wait 2 weeks for that appointment to come through from the hospital.

I feel like I've been plodding along for the last 5 years continually searching for the cause's of my daughters problems and we just get batted from piller to post with no one really wanting to sit down and listen preoperly or/and to get to the bottom of this. I dont know any other children her age who seem to have so many problems as this. It also effects her behaviour, being tired and listless and not knowing what to do with herself. I just want to make her better and healthy!!

Does anyone know of any reasons why she might not be absorbing iron? Could there be something wrong internally?? She's been on a gluten-free diet for well over a year now, nearly 18 months so I thought her gut would be well on the way to healing, but instead the problem had got worse.

Any help is appreciated, thank you!!

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I have a problem with anemia and coeliacs disease with my 5 year old daughter. She became anemic when she was 3 (nearly 4). We took her to the docs and she was having iron medicine but was still very tired and very pale. One of the times I went I begged with the doc to check everything on a blood test because I was sure there was something wrong (Iever since she was a few months old I had been regularly taking her to the docs and hospital because she was having severe stomach cramps, even a specialist childrens doc and they all said it was 'just wind' or that she was consitpated even though she went to the loo fine!!!). Anyway the tests came back and the one that signifies celiac disease came back as 300 (I think it was meant to be 20/30). So she went and had a biospy which confirmed she had (and prob all her life had) coeliacs. She was still anemic at the time and was on liquid oral iron. She kept going back for tests for her iron levels and they seemed to go up but she was still so tired. I had hoped going on to the gluten-free diet would solve all her problems, but they persisted. So the doc said he would do an 'investigation' blood test. This shows the actually amount of iron in her blood apparntly and not the superficial level the iron level was masking. I think it was the ferritin in the blood??? Anyway at the beggining of this year it was 9 (it should be between 13-30), and we carried on with the iron medicine. She's recently had another blood test and the ferritin has come back as 6!!!! This is desperatly low for a 5 yr old!!! And she has been on the oral iron medicine for over a year!! All the doc would say is 'well some people just dont absorb iron' but I dont feel thats a good enough reason. There must be a reason she is not absorbing it, this problem is continually getting worse and not better so there must be a reason for it. He said that she is obviously not absoring iron orally well so she will have to have, what he called, a booster injection. Apparelty an injection of everything (I assume he means vits and mins as well??). Now we have to wait 2 weeks for that appointment to come through from the hospital.

I feel like I've been plodding along for the last 5 years continually searching for the cause's of my daughters problems and we just get batted from piller to post with no one really wanting to sit down and listen preoperly or/and to get to the bottom of this. I dont know any other children her age who seem to have so many problems as this. It also effects her behaviour, being tired and listless and not knowing what to do with herself. I just want to make her better and healthy!!

Does anyone know of any reasons why she might not be absorbing iron? Could there be something wrong internally?? She's been on a gluten-free diet for well over a year now, nearly 18 months so I thought her gut would be well on the way to healing, but instead the problem had got worse.

Any help is appreciated, thank you!!

are you sure the iron she is taking is gluten free? I was diagnose with anemia at 17, was on pills for acouple years and then went off. A few months ago I was having problems with soars in my mouth, tiredness, always cold, pale, fatigue, feeling sick. I had a cbc done and my hemoglobin was a bit low. I went on iron pills again and I could not tolerate them, I would get so naucious even though I made sure to take them with food and no calcium/dairy....shortly after is when I found out my problems were due to gluten, although I havent been tested, going gluten free resolved about 85% of my problems....

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Yes her iron meds are def gluten-free and in liquid form. The only side effect (if you can call it that) from her taking it was it would stain her teeth. Tasted like metal too poor girl. I'm worried she has maybe some slow internal bleeding?? Or maybe something wrong in the gut?? But I never feel like the docs have time to listen or do enough to investigate. They seem to try and fob me off like its nothing, but its hardly normal!!

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Wow I just found this site. I just went to a new doctor yesterday who is sending me for celiac testing. I have had chronic anemia that does not respond to iron (on going for 13 years since my first child was born). I've had every kind of gynecological test yet all is fine. The HIGEST my ferritin has ever been in 10 and has been as low as 2 but usually hovers around 6 or so despite taking huge amounts of iron suppliments. THe other really odd thing with the iron, almost all types (with the exception of hemme iron) gives me really loose bowls. Is that a realted thing too? My old doc only ever said it was "odd" and iron sould make you constipated.

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