Anemia And Gluten Intolerance?

[brittluck]

Hi! I have been browsing here for a while, but can't quite find the help I need!

In April, I had a Celiac panel run b/c of my iron deficiency. It came back and showed that I was not gluten intolerant. I had really thought it would be based on my history of stomach problems. My whole life I have had stomach aches. Also, I have an allergy to wheat and corn. But they were never bad enough in my opinion to eliminate them completely from my diet. So I didn't!

I started heavily supplementing in April with iron. My energy level started to come back some, although still other signs of anemia like my hair falling out, etc...never went away. Slowly I stopped keeping up with it. I did not think I would have to supplement that heavily for my whole life. I just forgot over time. A few months ago, I realized I was back to where i had been with NO energy. Sleeping all the time, etc... And now my doc wants to send me to the GI to talk about gluten intolerance.

My confusion is this: if it was truly Celiac's, isn't it true that the iron would not help my anemia??? Also, does anyone know if my wheat allergy is a sign of gluten intolarance? I have so many questions, I just don't know where to start. I have read that you can test negative for Celiacs but still have it. But cutting wheat out just b/c seems extreme if it is "just" anemia. But then why does a perfectly healthy person (I have a degree in nutrition and am training for a half marathon) just become anemic for no reason? Any help for a rambling and confused person?!?!

[ShayFL]

There are many FALSE NEG with bloodwork. It may be that is your case. The ability to absorb iron varies from person to person and even if you were/are Celiac and supplementing heavily with iron, you could have made some progress. But once you stopped it eventually went back to where it was.

When was the last time you had your Iron/Ferritin tested? How bout your Folic Acid and B12? The anemias are interrelated and they should all be tested.

Celiac is a tricky thing. Some have it but test NEG on everything, but respond dramatically to gluten-free diet. Some of those people have the genes. Some dont have the genes but are POS blood and POS biopsy.

If a person is Celiac but not eating a lot of gluten at the time of testing they can get a FALSE NEG.

You really should have a biopsy done to look for damage and help with th dx of Celiac.

And to test again make sure you are eating LOTS of gluten (wheat, rye and barley) for a good 3 months before your tests for best accuracy. Some say 4 months is best.

Wishing you well!

[ENF]

Remember that Celiac is only one of many causes of anemia. About seven years ago, I was extremely anemic, and my ferritin level was zero. At this time, before I was diagnosed with Celiac, I had colonoscopy, middle bowel, and non-celiac specific endoscope tests done to see if there were problems. The results were all negative. The doctors were not looking for Celiac, although that should have been the first thing to test for. I went on iron pills and this improved my anemia somewhat. I still had many other problems, and later got the blood tests and endoscopy that confirmed Celiac.

You can try going totally gluten-free, see if you feel any better, and get your Iron/Ferritin retested. Another option would be to get more Celiac tests now including an endoscope for it (Don't stop eating gluten if you want to try this).

If there's still no improvement, then maybe it's time to start getting tested for other problems via colonoscopy, non-celiac endoscope, middle bowel, etc. It could ge non-GI related, also. Keep going to doctors until you get an answer.