Anemia And Celiac?

[Kmbishop03]

I have been told for years I have IBS and GERD, but now my cousin told me she is a Celiac so I went on the diet and have been feeling much better. Last time I was at the hospital because of a bad stomach episode, they told me I am very anemic. Is that also connected to being Celiac?

[Lisa]

I have been told for years I have IBS and GERD, but now my cousin told me she is a Celiac so I went on the diet and have been feeling much better. Last time I was at the hospital because of a bad stomach episode, they told me I am very anemic. Is that also connected to being Celiac?

Yes, anemia due to malabsorption is very common and often one of the main symptoms that precipitates a diagnosis.

[The Lovebug]

Yes! I don't know all the science here, but I do know that anemia is a result and, I think, kind of late stage development of Celiac. My father, who died a couple of years ago, had a serious bout of "severe" anemia about 10 years ago and was hospitalized for several weeks. The doctors determined that he was having pervasive internal bleeding, but they weren't able to find the source. Eventually, he was able to walk out of the hospital but he remained anemic and was on heavy doses of iron, for the remainder of his life. We didn't know anything about Celiac at the time. But I am now convinced that his long struggle with bad gastric problems, as well as the anemia, meant that he had Celiac. I was self-diagnosed about 4 years ago -- about a year before he died. My response to the gluten-free diet has made an amazing change in my life. I only wish we had known about celiac disease many years ago, and been able to save my dad a lot of pain and agony.

Sue

[Kmbishop03]

Wow, Im really sorry about your father. I bet there are alot of people who have suffered and had no idea why and its a shame! Thanks guys for all the advice... so what do all of you (who have the problem) do for anemia? My doctor keeps on trying to get me to take iron supplements (i dont eat red meat), but that just usually makes me stopped up and I dont need more stomach problems!! Any other suggestions?

[stargazer]

I was dealing with anemia for several years on and off. The doctor couldn't figure out why I was always anemic. I was taking supplements and eating the right foods. She didn't know that I had Celiac at that time. Once I was diagnosed and went gluten free, the anemia cleared up! My body could actually absorb the iron that I was eating.

[2BOYSMOM]

Hmmmm. I'm very new to this, but I've just been tested for Celiac (blood results neg) but doc still wants me to have endoscopy and i've ordered test from enterolab. However, my hemoglobin was actually high (14.2) but my ferritin was low and my B12 low. Doc says take a multi-vit with iron. Doesn't make much sense to me, how about any of you??

[Guest andie]

Wow, Im really sorry about your father. I bet there are alot of people who have suffered and had no idea why and its a shame! Thanks guys for all the advice... so what do all of you (who have the problem) do for anemia? My doctor keeps on trying to get me to take iron supplements (i dont eat red meat), but that just usually makes me stopped up and I dont need more stomach problems!! Any other suggestions?

When on the gluten free diet the villi in the intestine will regrow enabling the gut to better absorb the nutritional value of the food you eat.

Iron is one of the hardest minerals for any gut to absorb and not eating red meat or a vegetarian diet makes getting good access to iron more difficult. Research iron high foods (nuts are good). Also a multivit with iron would help accelerate the process. High fibre diet to counteract constipation, prune juice, natural stool softeners.

Retest for anemia in 6-8 months . Replentishing iron stores is tough. It has taken a life time to use them up. Once your iron/B12 levels come up and your gut is healthy, anemia should not be a problem anymore. If it is, you need to be thinking of some other source of the loss.

Hope this helps.

Andie

[confusedks]

I was severely anemic...my ferritin was less than zero on the bloodwork. I had Iron IV's which helped for a little bit, but then the numbers started to drop really quickly. My doctor wanted to give me another set of 5 treatments about 3 weeks after the first set!!! I was surprised that it didn't "hold". They just kept telling me it was normal....when I finally went gluten-free, my numbers froze. They didn't really get better, but they at least stayed where they were.

My hemoglobin was also high...almost 15 as well. But again, my ferritin was really low. I don't know why?!

Kassandra

P.S. I would suggest getting tested more often than 6-8 months. My hematologist had me getting tested every month for awhile. Just to see if there are any trends, etc.

[Guest andie]

I was severely anemic...my ferritin was less than zero on the bloodwork. I had Iron IV's which helped for a little bit, but then the numbers started to drop really quickly. My doctor wanted to give me another set of 5 treatments about 3 weeks after the first set!!! I was surprised that it didn't "hold". They just kept telling me it was normal....when I finally went gluten-free, my numbers froze. They didn't really get better, but they at least stayed where they were.

My hemoglobin was also high...almost 15 as well. But again, my ferritin was really low. I don't know why?!

Kassandra

P.S. I would suggest getting tested more often than 6-8 months. My hematologist had me getting tested every month for awhile. Just to see if there are any trends, etc.

Kassandra

Why the nut free diet? Did you get testing? Or was it more diet/symptom related? They say that a true lactose intolerance includes soya. Once you are on the diet for awhile will you try to reintoduce these?

Trying to know if I'm going far enough with my son.

Are you on an iron supplement? These make my son sick. We tried intrducing it slower than 3 times/day. After a year he's up to twice a day. Have stopped recently though, since he's feeling so much better.

Thanx

Andie

[confusedks]

As far as the iron making people feel crappy, I was once told by an acupuncturist that iron is a "heavy" supplement. I no longer take it and was only able to take it for awhile (few days...literally). I used to take a liquid iron which was the only one I didn't react to. It was from a healthfood store here in LA called Full O' Life. It was called "Tasty Iron Tonic." If you want me to get it for you...I would be willing to try.

Now, all the "Free-ness" of my diet. I have found that I get migraines when I eat nuts. Same with eggs in pure form. Seems OKAY in small amounts in baked goods, etc. Soy hurts my stomach and gives me really runny bowels and almost incontinence. (TMI, I know!) Once I have been off of them for awhile, I may try them again...but for now I have NO interest in them. The reason I went off of soy and nuts mainly was my allergist. He told me that all nuts are really allergenic (DUH!) and that I should go off of them and see how I feel. Soy he said was also really common in dairy allergic people also. I am going tomorrow to have skin scratch testing. I can let you know which I am really allergic to.

Kassandra

P.S. If you have anymore questions...feel free!

[tabdegner]

DH has EXTREMELY low levels of ferritin also. He had his levels tested because he has such severe RLS. The low ferritin levels cause the RLS, but I think he probably has celiac. (Because he also has other digestive issues, high liver enzymes and a strong history of autoimmune disease in his family.) It will be interesting to see what happens. His doctor has him on iron supplements for a month, then she will retest. He's going to ask for the celiac blood panel at that time. But his hemoglobin tests are normal -- just very very low ferritin.

[Guest andie]

As far as the iron making people feel crappy, I was once told by an acupuncturist that iron is a "heavy" supplement. I no longer take it and was only able to take it for awhile (few days...literally). I used to take a liquid iron which was the only one I didn't react to. It was from a healthfood store here in LA called Full O' Life. It was called "Tasty Iron Tonic." If you want me to get it for you...I would be willing to try.

Now, all the "Free-ness" of my diet. I have found that I get migraines when I eat nuts. Same with eggs in pure form. Seems OKAY in small amounts in baked goods, etc. Soy hurts my stomach and gives me really runny bowels and almost incontinence. (TMI, I know!) Once I have been off of them for awhile, I may try them again...but for now I have NO interest in them. The reason I went off of soy and nuts mainly was my allergist. He told me that all nuts are really allergenic (DUH!) and that I should go off of them and see how I feel. Soy he said was also really common in dairy allergic people also. I am going tomorrow to have skin scratch testing. I can let you know which I am really allergic to.

Kassandra

P.S. If you have anymore questions...feel free!

Kassandra

Thanks much for responding. We initially tried the liquid iron and my son is willing to try anything without much fuss, but after a few doses of that he just said NO. I bought the traditional ferrous sulphate, but the tablets were too big and he would take 1/2 an hour to finally get it down. He got better at it, but then it made him sick! I found one in Zehrs that is tiny and he is able to take that one without too much trouble.

Here's a horror story for you. The pediatrician ordered 'elemental iron 300mg three times daily.' on his script. I got it filled at Walmart with the liquid (better absorbed). The pharmacist filled it for me, did the teaching and sent me on my way. I read the label before leaving the store, being a nurse.

FYI ferrous sulphate 300mg contains 30mg elemental iron per 5 mls. I did a quick calculation and realized i would be giving him 50 mls (150 mls/day) from a bottle size of 250mls. That's one whole bottle every one and a half days! When I took it back to the pharmacist to inquire, he freaked!

I wasn't too pleased! But I have learned to read labels very carefully.

When he was 2 he stuck his fingers in a bench grinder. Lots of damage to his index finger. The emerg dept gave us a bottle of morphine to take home for overnight until we could get a script filled.

The label read. Morphine 5mg/ml. Give 15mls every 4 hours as needed. (Should have read mgs, not mls.) my husband is an instructions nut and if it had been him giving out the meds he would have given the dose, tucked my son in bed and we could have buried him in the morning! Cancer patients take 5-10. We would have given him 75mg at 2 years old!

Anyway, I'm rambling.

Let me know how the testing goes. How often would you get your iron level checked? Andrew's is not as low as yours, but still not good. Iron infusions are frowned upon in 10 year old's.

One person suggested B12 sublingually. You might try that. If your iron is that low what is your B12 like? Folate?

have you ever been told you were neutropenic when you were sick?

I don't think nuts are his problem. At first on the diet he thought I was trying to make him into a bird. He's been good for a while, but the last couple of days has stomach pains. He wonders about lactose.

Have you kept a journal of foods? Did that help?

Cross contamination is an ongoing problem here with 4 kids and all their friends.

Good to hear from you

Andie

[confusedks]

Andi,

I am not anemic anymore (well, I wasn't about 3 months ago). I will get my iron checked as soon as money allows (our insurance is crappy). My hematologist wants it checked every 3 months or so. Last it was checked was in June when I was hospitalized, so we are due again some time soon. My B12 levels were fine which was strange, because people can tend to have multiple deficiencies. I was never told I was neutropenic when I was sick but some of my doctors don't tell me stuff. What would I look for in blood panels? I have every lab report that has been taken over the last two years or so.

How long has he been gluten-free? It took a little bit of time for my iron levels to go up. They froze immediately. I had blood drawn the day before I went gluten-free, so we knew they froze.

As far as dairy, many people take it out for the first 6 months or so until the villi heal. One of the enzymes for breaking down lactose is in the villi which gets damaged when gluten is ingested in a celiac. I would HIGHLY suggest he goes off of dairy for awhile. I am also biased though to non-dairy. If you want more info on it, go to this website: Open Original Shared Link

I never did a food diary. The real reason was it takes too much dedication. For his stomach you may try a soy and dairy free diet for a little while. My allergist told me do 2 weeks and then introduce one...wait a week and introduce another. I would start with dairy free first because it is really common with celiac.

Lastly, I had testing today for allergies and I'm allergic to shellfish???? and REALLLLLLY allergic to bermuda grass and a grass mix. My arm is still swollen....8 hours later! They gave me nasonex and sent me on my way. I took it a few weeks ago and it gave me MAJOR energy which is great because when allergies are bad...I get EXHAUSTED! Hopefully it will work. We'll see.

If you have anymore questions, let me know!

Kassandra

[GreySaber]

When you guys say "anemia" Do you mean fatigue, or what?

[Guest andie]

Kassandra

To be neutropenic you have to have an absolute neutophil count of < 2. This is measured in a complete blood count (CBC). I'm not sure how the insurance thing works down there. If each component of the blood is tested separately or all together. you need them all to have an accurate picture of what your blood is doing. if it is measured all together it will be on the test with your hemoglobin.

I live in Ontario. We have wonderful, paid for insurance. no limits to the tests. just need a doctor's order. mind you some of them go overboard. have no idea how you manage health costs down there. i would recommend to anyone with a chronic illness to move to Ontario, but what you save in health care costs, you spend on snow shovels.

your neutrophils are what help you fight viral infections with. each component of the blood fights something different. ie. viral infection, bacteria, parasites. they all work together, but some are better at some things then others. when dr looks at complete blood work it gives him a starting point for diagnosis.

andrew having a bad day today. severe stomach pains and finally threw up. doesn't appear to be viral. he always gets a fever with those. we were really strict today with the diet. i monitored every crumb. however he did have dairy. (he LOVES his milk!) i suggested lactose free tonight for awhile and got a big groan. it never seemed to be a problem before. I don't know what else to do.

symptoms were always so vague before. now he has all out PAIN. and he is not a complainer. fell out of a tree one time and kept saying 'I'm o.k.' 2 days later diagnosed with broken arm. wouldn't have known except i caught him babying it. have to tell his coaches in hockey to watch him because he'd pass out before he complained.

hasn't had any nuts recently. kind of off those for awhile. he flits from craving to craving. has to eat what he feels like at the time or won't eat. makes him sick to think about it. always craves fruit, which is good. can't go wrong there can I? I'm beginning to wonder and getting discouraged.

I feel like building a second kitchen with a shower in the middle.

Sorry for the venting. Hope this answers your question about blood.

Andie