Anemia

[Penny-M]

Has anyone touched on this topic--I searched past posts and didn't see anything. I am curious to know how many have been told they are or were anemic before finding out they had Celiac and if they have gotten better since being Gluten free? There is a good article on it at www.gluten.net.

I myself have always been told that I had low blood pressure, I have always had cold feet and hands, and I have always told the dr's that I don't absorb nutrients like I should--especially vitamin B's. But not one dr has ever tested me for anemia. When I go back to the dr I am going to have them check --I definitely have symptoms that say I do. I would love to hear your thoughts on this. Or if there have been previous posts--point me to them.

Thanks

[lovegrov]

Anemia was my major symptom. In fact, it got so bad , I had to be hospitalized, which finally led to the diagnosis. Anemia and the resulting fatigue are, in fact, the most common symptom of celiac.

richard

[jerseyangel]

Anemia is a very common symptom of Celiac. I was severly anemic at the time I was diagnosed with a hemiglobin number of under 8. After about 6 months on the gluten-free diet, the number went to 14.6.

[Penny-M]

Anemia is a very common symptom of Celiac. I was severly anemic at the time I was diagnosed with a hemocrit number of under 8. After about 6 months on the gluten-free diet, the number went to 14.6.

Is is possible to be slightly anemic? I find it hard to believe with all the blood work and surgeries I have had that no dr has clinically said I am anemic, so is it possible that my blood levels can fluctuate from one test to another to where it doesnt register?

[jerseyangel]

Is is possible to be slightly anemic? I find it hard to believe with all the blood work and surgeries I have had that no dr has clinically said I am anemic, so is it possible that my blood levels can fluctuate from one test to another to where it doesnt register?

Sure, there is a range where you could possibly be at one end or the other. What I would do is call you doctor's office where you had your bloodwork done and ask for a copy.

[tarnalberry]

yes, totally possible to be "slightly anemic". in face, it's possible to be anemic, based on what YOUR system needs, but not test as one, based on averaged reference ranges for the general population. that has definitely been the case for me.

[TrillumHunter]

A physician will look at your hematocrit and hemaglobin on your CBC. If they fall within normal limits, they won't look for anemia. But you can have a borderline H&H and a serum iron in the single digits. Hi, that's me.

Any crisis , even minor, will cause severe symptoms. That was me as well. I had a slightly below normal H&H for years, like one point, but everyone said it was fine. I was cold and dizzy and out-of-breath, but that was okay. Until one day I bent over to pick up the newspaper and passed out. Then they started screaming hospital and transfusion and everyone was interested.

Being anemic is stressful on your body. It's not okay to be slightly anemic.

[jkr]

Anemia was my first symptom also. The doctor thought I was bleeding somewhere because of the anemia. My hgb was down to 10, my mcv was low and my ferritin was 9.

After taking oral iron and a gluten free diet, my hgb is 13.

I think that's how a lot of people get diagnosed.

[Puddy]

I was also diagnosed by my severe anemia and my doctor thought I was bleeding somewhere, too. My ferritin level was 1. The doctor said she would let me try taking iron tablets for the first month and if the level didn't rise I would have to have transfusions. But I'm happy to say all my levels have risen nicely.

[curiousgeorge]

Me too on the anemia being my main symptom. I've had issues with getting my iron back up even on the gluten-free diet.

[Wolicki]

Me, too. Been anemic my whole life. Hope it will improve now

[gf-soph]

I was anemic for 2 years before going gluten free, both iron and B12. My levels were always perfect before the onset of severe GI symptoms in 2007, I was totally unable to absorb nutrients properly after that. I also couldn't tolerate iron pills, so had to resort to injections to get any iron in my system. Since going gluten-free I can absorb iron again and my levels are steady.

Interestingly I have been severely glutened twice since going gluten-free, and both times my B12 levels nosedived - there is definitely a link!

I would make sure that they test your iron, B12 and folate, as there is an interaction between all 3 so that if you just look at your blood count or red cell size it may look normal, but you could be low in one or more.

Definitely get a copy of those tests, as you can be above the "normal" range and still be affected by it. Finding out what level you need to be at is a personal thing - the minimum level of B12 is 145 here in Australia, but I have learnt from experience not to let myself get below 300 otherwise I feel awful.

[Roda]

Found out I was slightly anemic Dec. 06 after having crazy symptoms since that Feb. Heart racing, light headedness, fatigue and shortness of breath. I was given iron pills to take and was told it was most likely due to blood loss from having periods. Went appx. another 1.5 years (the hemoglobin and hematocrit were fine at this point) but still having symptoms and then found out my ferritin was 6. I began my own research and asked my endocrinologist to test for celiac because of the chronic low iron. I have been reluctant to take oral supplements because in the past they really aggrivated my heartburn. I don't have it much anymore, so I recently have started slow fe 2 tablets a day. So far I'm tolerating it. I had my ferritin checked again in August and it only slightly raised on the gluten free diet to 10. So I'm hoping the pills will help or I probably will be going for a iron transfusion toward the end of the year.

[Penny-M]

Thanks for all the replies--I have to go in for my yearly physical anyway so I will ask then for a copy of my blood work and I will also ask them to check for anemia. If I am then I have definitely been my whole life, I have always been unable to run without having a shortness of breath, I used to pass out when I had my menstrual cycle, thank goodness that stopped. The dr's never could tell me why--kept saying it was hormonal and that it would pass one day. Well guess what I don't faint dead away but I still get very light headed and dizzy at times. If I get a flu bug --watchout I will faint quickly, and I will shake, and I get so cold. It's a sight especially if it hits at work. It's not unusual for the boss to find me curled up on the office floor if I get sick.--I try to prevent that.

At least I know now that my hunches are probably correct. Do any of you find eating foods with iron helpful? I am trying to get foods with iron in me daily, because I know by absorption capabilities are very poor to not at all.

[milly85]

Funny, I just posted this in my first question on this forum. Look below! I have been diagnosed with anemia only two weeks ago, with a folic acid deficiency. I don't know if I have been anemic all my life. I do remember being told once in school to put on foundation because I looked so pale and sick. That was quite a few years back I am 24 now. I am not sure if I am celiac, I want a test done but I'm not sure how. I did ask my doctor, but I don't think she listened. The test only confirmed I had anemia. And now I look back, the blood test form didn't mention celiac test. ugh...

[pewpewlasers]

I had anemia pretty much my whole life (from what I can remember). The doctors never looked into what it was caused by. I had blood work done after I was on a gluten free diet and for the first time I didn't have anemia!

So many doctors are bad and you have to find the one that will actually listen to you and look further into your symptoms.

[Penny-M]

Funny, I just posted this in my first question on this forum. Look below! I have been diagnosed with anemia only two weeks ago, with a folic acid deficiency. I don't know if I have been anemic all my life. I do remember being told once in school to put on foundation because I looked so pale and sick. That was quite a few years back I am 24 now. I am not sure if I am celiac, I want a test done but I'm not sure how. I did ask my doctor, but I don't think she listened. The test only confirmed I had anemia. And now I look back, the blood test form didn't mention celiac test. ugh...

Celiac Blood testing is an entirely different form, I forget the name of it but others have posted the name here on the board. It cost with insurance about 700.00 so make sure if you have it done your insurance covers it. My parents got approved for the testing and the next thing you know they received a 700.00 bill fore each of them. Ouch!!! after fighting with the insurance company, it got paid because they had the approval from the insurance company prior to the test.

[TrishaG]

GET YOUR B12 shot!!! It can kill you and cause the craziest symptoms. If you are feeling anxious, your body is telling you something. Dont fool with the psychiatric end as it will confuse you. Doctors just hardly ever look for b12 anemia and almost never want to say it will make you better until they met me. I was in the hospital and released and completely helpless for last few months. CATAPLEXY -(how rare is that?) without narcolepsy or any reason to having it. Heart went into sinus rythyms which they said wasnt dangerous but I sure felt it. Breathlessness for no reason will make you crazy. It does not hurt to overdose on b12 shots as your body will throw out what it does not need. I don't suggest oral supplements because you probably lack the intrinsic factor to absorb it. Shots are cheap and can save you alot of hospital visits and arguments with doctors. I have found that many doctors just don't want to give it to you without testing, but the tests lie. Take it anyway and if you feel alot better within 2 days you nailed it. B12 is so undiagnosed in America. You will definately notice the difference in your cognition and memory but the fatigue and breathlessness on exertion is going to take a few shots and few weeks while your stomach is healing from the trauma. I CANNOT express enough to you how you should stick with your gut on the Vitamin B anemia. I was paralyzed 3 times and they took a spinal tap to find it. I have had b12 anemia as the first symptom and did not get celiac for several years after. I thought I was bi-polar and they kicked me out of the mental house saying I have some medical reason for the anxiety and they cannot help me. Doctors just do not realize the severity of anemia in the b vitamins. I also now have developed a potassium anemia and bacteria unknown because I did not realize I FORGET to take monthly shots. Some people need daily, some weekly. You will know. Reach for the B12 serum before ever spending money on expensive tests and meds. Its the one thing I know they wont think of when your symptoms are severe and seem unrelated to any diagnosis. Hope this puts your anxiety to rest. My story would shock you of what b12 has done to me and how many hospitals and specialists missed it TOTALLY untill they saw me walk again and back to my senses after the shot. FIGHT FOR THE SHOT AS IF IT WAS YOUR LIFE and drink pedialyte (not gatorade) to avoid dehydrating and potassium/magnesium slumps while you have sweats and bowel/bladder frequency while avoiding gluten to heal. If your chest starts hurting with the breathlessness, get to the hospital. You may also notice white spots appearing and leaving your forearms or legs. Thats a tell although there is alot of b12 symptoms you may or may not get. Just dont ignore any one of them.

[Ahorsesoul]

Trisha,

I'm with you about B12. I was put on it as a treatment for my fibromyalgia. I do weekly shots now. I can really tell if I miss a week or two. It also helps relieve my migraines.

[Bob J]

yes, totally possible to be "slightly anemic". in face, it's possible to be anemic, based on what YOUR system needs, but not test as one, based on averaged reference ranges for the general population. that has definitely been the case for me.

Your post caught my eye. I was endo'd and diagnosed with Celiac Sprue in Sep 2008 after 1.5 years of diahrea and steady weight loss. Following that I've done my best to follow the Gluten Free Lifestyle. My problem is that I have continued weight loss and continue to be "slightly" anemic with low RBC, HGB, and enlarged average corpuscle volume (hope I got that right). Since diagnosis, I have lost 50 more lbs (4 yrs) and am at my high school weigtht. I try to be gluten free, but based upon some episodes of diarhea and terrible flatulence, I believe I have ingested "hidden" or "sabotage" gluten due to cross-contamination or mis-handling by restaurants.

My Internist has been crediting the Sprue as he calls it, but goes no further. When I visited one of his PA's the other day, she pulled a chart of my CBC's over several months and she expressed concern with the marginally low and high counts. I seem to have leveled off in my weight loss, but still have occasional foot and leg cramps along with stomach bloat and cramps. Nothing intolerable, but I keep wondering if I'm one of those celiacs whose gut hasn't recovered sufficiently and I've got an absorbtion problem. Now the internist is referring me to a hematologist and he has done a full skeletal x-ray, a 24-hour urine catch, and more extensive blood testing. Have you ran into any of this?

Bob J

[mushroom]

This is a really old post you are responding to, Bob J, but hopefully someone will pick up and respond to it. Welcome to the board by the way.

If you eat out a lot and are not extremely careful it is so easy to get cross-contamination. And enough cc can keep the damage going in the gut and prevent full recovery. And for some of us leaky gut is very hard to cure without good probiotics and specific treatment.