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ClevelandRocks

Can You Be 'only' Gluten Sensitive But Still Have Anemia?

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Hi,

 

I have Selective IgA Deficiency. Mayo Clinic clocked it at a big, fat 0. I've had endless intestinal issues my entire life. Numerous, scopes, etc. I've been told I have inflammation but it's never been conclusive enough to say Crohns or another form of colitis. It's more like a fleeting inflammation that comes and goes. My immunologist said that is more in line with IgA Deficiency, although you can develop those other diseases, too. I do carry the gene for Celiac but all blood testing and even the one biopsy years ago tested negative for Celiac. However, I know I am gluten intolerant. I feel so ill ingesting foods containing gluten, I already know this.

 

Anyway, I've always been low on iron, ferritin, iron saturation, and my hemoglobin and hematocrit have been slightly low too. I've had undetectable numbers of vitamin D and my B12 was low a couple years ago, too. I usually just attributed the iron numbers to menstruation.

 

However, in October 2012 I had a full hysterectomy, ovaries were taken out. I do not menstruate anymore. I thought my tests for iron would go up but guess what? They are worse! Currently, I have a super low iron saturation, at like 4%, iron is low, ferritin is low, and my recent hemoglobin is 11.6 and hematocrit is 34. I know those last two are not earth shattering but they are the lowest numbers since my surgery a year and a half ago.

 

I am scared because I am not bleeding monthly so why are these numbers low? I might have to undergo more scopes to check for any internal bleeds and probably get tested for celiac again.

 

But what I am wondering is if anyone has gluten intolerance (not Celiac) and stills suffers/suffered with anemia? Could this be due to gluten intolerance alone?

 

Thanks a lot.

Edited by ClevelandRocks

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I do know if your not eating Gluten your Celiac test will be negative. I have a friend that is anemic and it has nothing to do with being Celiac or intolerant. That can be an issue all on it's own. 

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I think that the problem is that non-Celiac intolerance or sensitivity are poorly understood at this point. 

 

The common belief seems to be that if you don't have Celiac, gluten probably isn't going to cause damage to the intestines which in turn causes issues with malabsortpion of nutrients which causes anemia. So, I think at this time if they say you don't have Celiac it probably isn't what is causing the anemia. However, if they have not ruled out Celiac you could do a gluten-free trial and see if that helps. I think most people who have anemia related to Celiac see their numbers increase after they have 6 months or so gluten free. 

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As Fenrir pointed out, non-Celiac gluten intolerance is even less understood than Celiac is at this point.  However, NCGI folks get to experience most if not all of the same symptoms that us Celiacs do.  Many of these symptoms are believed to be caused by the malabsorption issues that are believed to be caused by the damaged villi.  But NCGI folks do not have damaged villi.  So personally I am not convinced that it is the damaged villi that is the sole cause of the problems in the first place.

 

So yes, I think low nutrient levels can be caused by either Celiac or NCGI.  But anemia can be caused by other things too and you could have anemia and either Celiac or NCGI and have the two issues not be related at all.

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Hi, thanks for the responses so far.

 

Well, the thing is when I was tested for Celiac a couple years ago, I was eating gluten. I made sure of it.

 

I also know that a couple years ago I went gluten free for about a year.... that was the only time in the last 10 years that my iron, iron saturation and ferritin were in very healthy ranges! I have kept copies of everything and know this to be true. Right now, though, I am ingesting gluten and have been for about six months. I do have to wonder if I remove gluten, and check my iron again and see if those numbers go up again. That would be probably more conclusive than anything else!

Edited by ClevelandRocks

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As Fenrir pointed out, non-Celiac gluten intolerance is even less understood than Celiac is at this point.  However, NCGI folks get to experience most if not all of the same symptoms that us Celiacs do.  Many of these symptoms are believed to be caused by the malabsorption issues that are believed to be caused by the damaged villi.  But NCGI folks do not have damaged villi.  So personally I am not convinced that it is the damaged villi that is the sole cause of the problems in the first place.

 

So yes, I think low nutrient levels can be caused by either Celiac or NCGI.  But anemia can be caused by other things too and you could have anemia and either Celiac or NCGI and have the two issues not be related at all.

 

This definitely makes sense, thanks.

 

I am at such a loss though because I had major surgery a year and a half ago, traditional surgery too where the surgeon opened me up, making a point of checking every organ, he was meticulous. I've had two abdominal/pelvic cat scans since too, nothing abnormal has showed up. I know even a tiny polyp could cause bleeding which might not be picked up on a cat scan, however. It's just weird because my iron and hemoglobin has really never come up since the surgery, it's not like they climbed up nicely and then suddenly went downhill. they just haven't bounced back at all. That would lead me to believe that whatever the problem is was there well before my surgery when my entire abdomen was examined by a very qualified gynecologist/oncologist too. Unless I have some other type of anemia. I even saw a hematologist about this when this all started too, he wasn't impressed and basically shrugged me off. Though I am a little lower now but still. This is so frustrating! I live 50 minutes from Mayo Clinic, Rochester, Minnesota. I am really tempted to just go there and get a full work up.

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before i was diagnosed with celiac, my iron levels were high, even when i wasn't absorbing nutrients.  when people go gluten free, whether it's the problem or not, they tend to get meticulous with their diet.  when they see improvement, they attribute it to the gluten removal, when i is more than likely attributed to eating a healthier, cleaner diet.  good luck!  :)

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There are many reasons for anemia and many types of anemia.  You might want to talk to a doctor about this as it can be serious.

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I wish there was a more definitive answer on if NCGS can cause the same vitamin deficiencies as Celiac. I have wondered about this myself. Seems like there are a lot of contradictions out there and conclusions about the two keep changing.

Did you have a problem when you began eating gluten again? If I was eating gluten, I'd get tested.

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I wish there was a more definitive answer on if NCGS can cause the same vitamin deficiencies as Celiac. 

 

 

As I tried to explain on another thread - there likely are many reasons for NCGI.  Researchers are still looking into this.  So you would need to know why you are intolerant to wheat or gluten or FODMAPS, etc before you can really answer some of these issues.  

 

IF you know a food bothers you, don't eat it.

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As I tried to explain on another thread - there likely are many reasons for NCGI.  Researchers are still looking into this.  So you would need to know why you are intolerant to wheat or gluten or FODMAPS, etc before you can really answer some of these issues.  

 

IF you know a food bothers you, don't eat it.

I agree!

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This definitely makes sense, thanks.

 

I am at such a loss though because I had major surgery a year and a half ago, traditional surgery too where the surgeon opened me up, making a point of checking every organ, he was meticulous. I've had two abdominal/pelvic cat scans since too, nothing abnormal has showed up. I know even a tiny polyp could cause bleeding which might not be picked up on a cat scan, however. It's just weird because my iron and hemoglobin has really never come up since the surgery, it's not like they climbed up nicely and then suddenly went downhill. they just haven't bounced back at all. That would lead me to believe that whatever the problem is was there well before my surgery when my entire abdomen was examined by a very qualified gynecologist/oncologist too. Unless I have some other type of anemia. I even saw a hematologist about this when this all started too, he wasn't impressed and basically shrugged me off. Though I am a little lower now but still. This is so frustrating! I live 50 minutes from Mayo Clinic, Rochester, Minnesota. I am really tempted to just go there and get a full work up.

 

Keep in mind that blood loss is not the only cause of anemia.  Check this site out... it may lead you to a another possible underlying cause:  http://www.webmd.com/a-to-z-guides/understanding-anemia-basics

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Keep in mind that blood loss is not the only cause of anemia.  Check this site out... it may lead you to a another possible underlying cause:  http://www.webmd.com/a-to-z-guides/understanding-anemia-basics

Yeah, it can be anything from bleeding, malabsorption, bone marrow dysfunction (various causes), chemical poisoning........ect 

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There are more than 400 types of anemia.

What causes the destruction of red blood cells is a question for a hematologist.

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Yes, I saw a hematologist three years ago because my anemia dipped lower than ever but it was only temporary. He ran every test you could imagine back then and I was told I was fine. He checked me for every type of anemia, even the rare forms. He deduced I had slight iron deficiency due to menstrual blood loss. Then I went back to him about six months ago after I had the hysterectomy and said I was still running lower hemoglobin and iron counts that I assumed would go up since I am not bleeding monthly anymore. He wasn't impressed with my numbers and basically said if they dipped lower he would consider redoing the first batch of tests. They have dipped slightly lower but probably not as low as he made it seem like would cause him to redo those tests. However, I called his office today and amazingly they got me into him this Friday afternoon so I will discuss this with him and hopefully he will redo some tests. If I get the all clear from him that my anemia is just iron deficiency then I can proceed with the GI tests and go from there.

 

In the meantime, I suppose I should consume gluten until this is all sorted out. My primary did a baseline celiac blood test the other day that I haven't received the result yet. Like I said, I am IgA Deficient and he knows that so he ran something with IgG. I guess we will see.

Edited by ClevelandRocks

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Low IgA is found more common in celiacs than the rest of the population - I believe it's about 5% are deficient.  I have no idea if this applies to those with NCGS as well.

 

I agree with many of the others that the damaged villi may not (probably does not in my opinion) cause nutritional deficiencies in celiac. I think inflammation is probably the bigger culprit, and those with NCGS experience inflammation just like a celiac would.... This is just my opinion though; I'll probably have to wait another 5-10 years before I find out if I'm correct. ;)

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LOL I agree with this too based on my own observations. In the past I've had 4 colonoscopies, 4 upper endoscopies, cat scans. I've been told more times than not that they found inflammation not only in my stomach due to severe acid reflex but in my duodenum, large and small intestine, too. It is fleeting though, it comes and goes, it doesn't leave that big time damage that a Crohn's leaves. I had a cat scan once which showed inflammation in my large intestine and terminal ileum (small intestine that is very important as far as absorption) but a month later when I had my colonscopy for follow up, I didn't have inflammation. Another time I had inflammation that they biopsied and it wasn't specific enough to diagnose Crohn's or another form of colitis.

 

My immunologist told me this is a typical pattern for IgA Deficient patients, a fleeting inflammation that comes and goes. He also told me that if I developed any conclusive diagnosis, his money's on Celiac but at the very least, he knows for a fact that I have NCGS and have had it since birth because that's how IgA Deficiency works.

 

When I went on that strict diet back in 2011 for about 14 months not only did my diarrhea, bloating and nausea get better, but I tracked my iron, ferritin, iron saturation levels and they were normal, not even low normal, they were as normal as can be. They have gone down significantly since then. I think I already have proven that my issue with low hemoglobin/low iron is gluten sensitivity but I might as well go through the batch of tests once more just to make sure there's not a polyp or something that is causing some steady blood loss. Of course get the Celiac biopsies again, and have the hematologist take a look on Friday and do some bloodwork. If everything checks out okay as far as not a diagnosis of anything else, then it's a certainty that gluten sensitivity is 100% the culprit. Either way, it's gluten free long term for me in the very near future.

Edited by ClevelandRocks

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I meant more along the lines of systemic inflammation, but some with NCGS show intestinal inflammation as well. I did not know that intetsinal inflammmation was linked to low IgA  - interesting! Well,  maybe not for you.  LOL ;)

 

Good luck with the diet.  :)

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Hi ClevelandRocks,

 

I know you have said that you are IGA deficient, I am wondering if the doctors have looked at serum quantities of the other immunoglobulins (namely IGM and IGG)? Common Variable Immunodeficiency (CVID) can cause some GI issues and malabsorption if there is also damage in the small intestine. Here is a good resource for more in depth information: http://primaryimmune.org/about-primary-immunodeficiencies/specific-disease-types/common-variable-immune-deficiency/ Something to consider if you haven't already, especially if you get sick frequently and/or severely.

 

If you do have low IGG along with the low IGA that can make the celiac blood tests a bit trickier as you wouldn't be making a normal amount of antibodies to begin with.

 

Best wishes,

Ninja 

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