Anemia And celiac disease - How Long To See Improvement?

[sammie210]

I've not been officially diagnosed with celiac disease but I've been eating gluten free for a month. For the last 18 months, I've had to have IV iron infusions and transfusions because of very severe iron deficiency anemia. All GI tests found no bleeding and I'm post menopausal by 10 years, so there's no bleeding there, either. Once the docs figured out there was no abdominal bleeding, no one was trying to find the cause of my problems: Nexium for the reflux, live with the stomach pain, and get the infusions for the anemia but don't worry about WHY. So, I did my own research into all my weird symptoms, and the one thing that kept coming up was celiac disease and so I'm going gluten-free.

I'm in the middle of a series of infusions right now and I'm wondering, if anyone has been through this, if going gluten free helps, how long will it be before I see results in my blood tests. Will my body already start absorbing and using the iron to produce red blood cells?

I'm sorry now that didn't insist on the celiac disease tests before I stopped eating gluten, but now that I have, I really don't want to go back on it to get an official diagnosis. The two times I've goofed and eaten some gluten, I was in pretty bad pain. Any real reason why I should go back on it, or can I just keep eating gluten free and not worry about a diagnosis.

Any inisight would be greatly appreciated and thanks in advance,

Sammie

[jerseyangel]

Hi and welcome

I was anemic before I was diagnosed--my hemiglobin was 8. Oral suppliments wern't making a difference, but I was never given iron infusions.

Six months after beginning the gluten-free diet, my hemiglobin was 14.6. It's been fine ever since, I've been gluten-free for 3 years.

[sammie210]

Hi and welcome

I was anemic before I was diagnosed--my hemiglobin was 8. Oral suppliments wern't making a difference, but I was never given iron infusions.

Six months after beginning the gluten-free diet, my hemiglobin was 14.6. It's been fine ever since, I've been gluten-free for 3 years.

Thanks for the info and the welcome! My hemoglobin was down to 4.9, which is when they finally decided to do a transfusion. The hemotologist said it's a wonder I wasn't in a coma! Even after all the infusions, the highest it's gotten up to is 11.8, which is still below the reference range. I sure hope being gluten free helps. I'm tired of being sick and sick of being tired!

[TipTip]

Hello!

I too had unexplained anemia from age 5 until this past January - so about 23/24 years. Never resolved with iron supplements - in fact rarely even got a bit better. This January, went in for well woman physical and the Hemoglobin was around a 5 and they were talking about immediate iron transfusions, which I adamantly did not want - so they tried the endoscopy first and found the celiac.

I have been slightly remiss in getting my blood drawn again recently, but I can say after five months on the diet, I truly do feel better - I don't need the sleep I used to, I don't get as fatigued as I used to and the weird blotchy, gray skin has gone away for the most part as have the circles around my eyes and my hair and nails are better - I do believe my iron levels are good now.

[ShayFL]

Yes, my dark circles are disappearing too.

[munchkinette]

Same here- anemic for 3 years, nothing helped. I did my own research and found the diet. I never got a biopsy and some of my tests came out negative. I feel better when I can stick to the diet.

[Ab-Normal]

I'm another anemic celiac...

1) My low # so far has been 9. I can't imagine what 4.9 feels like. Wowzers.

2) I am a very lucky nerd; it was the hematologist/oncologist who sent me to the gastroenterologist for the endoscopy after my first visit. (Of course, she was thinking cancer, which made hearing celiac instead almost a relief.)

3) Six months, you say? I can make it that long.

[sammie210]

I'm another anemic celiac...

1) My low # so far has been 9. I can't imagine what 4.9 feels like. Wowzers.

2) I am a very lucky nerd; it was the hematologist/oncologist who sent me to the gastroenterologist for the endoscopy after my first visit. (Of course, she was thinking cancer, which made hearing celiac instead almost a relief.)

3) Six months, you say? I can make it that long.

4.9 feels REALLY bad. I worked and slept. That was it. I couldn't walk across the room without getting winded. My mouth was full of sores. My heart beat so hard and so fast, it would actually wake me up from a sound sleep. I really thought I was going to have a heart attack. It was amazing when I got the transfusion. They gave me 3 units and by the time the first one was done, I could actually feel a difference!

So, as you can guess, I'm REALLY hoping and praying that eating Gluten Free makes a difference. We'll see in another 6 months I guess!

[cruelshoes]

Pre-DX I was anemic enough to require frequent iron infusions. I was like you - the doctor said "why are you walking around? you should be passed out!" It would get to the point where I could not walk up a flight of staris without holding on to my husband's arm and stopping in the middle to rest. Since I went gluten-free, I have had iron in the normal range and have not needed an infusion in 3 years.

[jerseyangel]

I can't imagine 4.9--at 8, I literally couldn't keep my job as I had to stand a lot. I kept passing out. I tired easliy, and was pale as a ghost--my husband once said back then that I wasn't pale, I was transparent.

[marie06]

Have you been tested for thalassemia? Im hoping that if you are in the care of a hematologist he would have checked, but one never knows.

[mommida]

There are many things that can cause anemia. You still need tests to find out what is causing the anemia. Since you've started the gluten free diet - any tests for Celiac will be inconclusive. Pernicious anemia is connected to Celiac disease. Find a doctor that will work with you to find out what is causing such severe anemia.

Good luck.

For your question "How long until you see an improvement?" The rates are variable. It could take up to a year for you to start feeling better. If you were suffering from extreme "D" you could notice improvement is one week.

[Salem]

I quit gluten May 1/08. My iron count had been slightly low for years, in late April it was 5. Everyone I've told that to gives me a look like it couldn't have been possible. I felt "fine" (other than my gluten-induced hell). I get tested again August 1st, we'll see if the iron supplements have helped. I do feel so much better and have more energy, but is that because I'm gluten-free or because of the iron?

[VioletBlue]

It took me about six months being gluten free to see an improvement. No infusions, just oral supplements and an odd craving for pate that I indulged, go figure. Going gluten free is the best treatment though. It allows the damaged villi to heal so they can start absorbing the iron you consume.

Thanks for the info and the welcome! My hemoglobin was down to 4.9, which is when they finally decided to do a transfusion. The hemotologist said it's a wonder I wasn't in a coma! Even after all the infusions, the highest it's gotten up to is 11.8, which is still below the reference range. I sure hope being gluten free helps. I'm tired of being sick and sick of being tired!

[hawaiimama]

My ferritin was 2 at one point and all I was told to do was take more iron. Doc didn't believe me that the stupid iron pills were doing NOTHING for me. I was so anemic I had no color at all the the inside of my eyelids.

I'm waiting for the boost out of anemia too. I'm hoping the diet with the iron pills finally does something in that dept