nasalady- celiac question

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alli sunshine
Regular Member


Date Joined May 2009
Total Posts : 40
   Posted 2/20/2010 1:24 PM (GMT -7)   
I had posted a couple of days ago about celiac disease. I had more blood work done and got the results. My ferritin level was extremely low. Due to this, combined with very low serum iron and very low vitamin D, she is putting me on massive doses of vitamin D and prescription iron. If in 6 weeks she doesn't see "dramatic" improvement" she is sending me to a hematologist to have an IV iron transfusion and have them figure out why I am having absorption issues. That being said, the blood work for my celiac came back negative. I am somewhat confused by all this. I was on prescription iron last year when we first discovered my anemia issues. I have since had a uterine ablation and have not had a period since June of last year. I was really thinking things would have perked up by now. Do you think I could still have celiac issues even thought the blood work came back negative? I just can't figure out why I am not getting better.

I have many symptoms- chronic stomach inflamation, gastroparesis, Raynaud's, joint pain, fatigue, high ANA (1:640), family history of RA, but the rheumy I saw did lupus DNA testing and said nothing came back, but that I needed to be watched for autoimmune to develop. Do you think all of this is connected?

Sorry about so many questions, I am just tired of trying to figure all of this out. It is like a bad dream that goes on and on.

Thanks.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 2/20/2010 1:35 PM (GMT -7)   
Um. You might get a lot more responses, and more knowledgeable ones, if you post in the Celiac Forum at
www.healingwell.com/community/default.aspx?f=36

Cheers,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


alli sunshine
Regular Member


Date Joined May 2009
Total Posts : 40
   Posted 2/20/2010 1:55 PM (GMT -7)   
Sorry, nasalady replied to me earlier this week. She has celiac and was pretty helpful, so I just posted here. Sorry if I did something wrong.

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 2/20/2010 6:28 PM (GMT -7)   
alli sunshine said...
I had posted a couple of days ago about celiac disease. I had more blood work done and got the results. My ferritin level was extremely low. Due to this, combined with very low serum iron and very low vitamin D, she is putting me on massive doses of vitamin D and prescription iron. If in 6 weeks she doesn't see "dramatic" improvement" she is sending me to a hematologist to have an IV iron transfusion and have them figure out why I am having absorption issues. That being said, the blood work for my celiac came back negative. I am somewhat confused by all this. I was on prescription iron last year when we first discovered my anemia issues. I have since had a uterine ablation and have not had a period since June of last year. I was really thinking things would have perked up by now. Do you think I could still have celiac issues even thought the blood work came back negative? I just can't figure out why I am not getting better.

I have many symptoms- chronic stomach inflamation, gastroparesis, Raynaud's, joint pain, fatigue, high ANA (1:640), family history of RA, but the rheumy I saw did lupus DNA testing and said nothing came back, but that I needed to be watched for autoimmune to develop. Do you think all of this is connected?

Sorry about so many questions, I am just tired of trying to figure all of this out. It is like a bad dream that goes on and on.

Thanks.


Hi Alli,

Yes, you absolutely can still have celiac disease and have negative bloodwork! Have you been avoiding gluten? I'm sorry I don't remember if you were already trying the gluten free diet or not....

The reason I ask is that negative blood work will usually be the result if you've been gluten free for several weeks (or even gluten light). Of course, even if you've been eating gluten, false negatives are frequent too! Which is very frustrating.

The low ferritin and low vitamin D are a couple of classic celiac indicators, but they can be caused by other things as well. For example, people with Lyme disease (which I have too) are frequently low in vitamin D.

You might want to check out the following website: /www.enterolab.com/Home.htm. I know that Enterolab does stool testing for food sensitivities and many of the people who post at celiac.com have used them to confirm a gluten sensitivity when their bloodwork came back negative for celiac disease. They can also test your DNA to see if you have one of the celiac genetic markers (HLA DQ2 or HLA DQ8). (Please note: I am NOT connected with Enterolab in any way, nor have I used their services...I'm just passing along info that I've gotten from other celiacs)

The best test of all for gluten sensitivity is to simply stop eating gluten for about 2 weeks then go back on a "regular" gluten-laden diet. If you have gluten issues, you will feel better off gluten and then will feel terrible after you start eating gluten again. It might take a day or two for the bad symptoms to develop when you start eating gluten again, but they will occur. The only caveat is that it is possible to be an asymptomatic or "silent" celiac, but this is fairly rare I believe.

Lynnwood, the celiac forum here on HW is not very active.....I think that may be why Alli posted here, because she was trying to reach me. Alli, please feel free to email me too, if you wish....just click on my name and my email address is listed on my profile. Also, you might want to visit the forums at celiac.com.....they are very active! :)

Good luck! Don't be afraid to keep pushing to find the answers! You have to advocate for yourself with the medical profession; yes, they are the experts but they are not infallible. Find a doctor who will listen to you and who will keep an open mind, if you can.

Take care,
JoAnn
Lyme Disease, AIH, Hashimoto's, "lupus-like" CTD?, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel, Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP, Darvon, Morphine Sulfate

autoimmunediseasesgfliving.blogspot.com

Post Edited (nasalady) : 2/20/2010 6:31:58 PM (GMT-7)

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