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Can You Be Celiac, But Not Have Anemia?


sneezydiva

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sneezydiva Apprentice

I go to get the result of my celiac and other blood tests in a week. It sounds like unexplained anemia and is a big symptom of celiac. But I've had tons of blood tests in the past and never shown to be anemic. Now, I have always taken a multi with iron everyday,as well as many other antioxidants in a desprate attempt to get more energy. I also CRAVE iron rich foods like red meat and spinach and eat a lot. Could that make the difference?

Now electrolyte balance is another matter. My electrolytes are often off. I live in AZ, and doctors attribute this to me not being used to the heat, and prescribe Gatoraid, which I will admit does help a little, but not like I would expect it should. I never feel properly hydrated even though I drink water like a fish. If I get a stomach bug, I need to go to the E.R. and get an I.V., it's that bad. And when I had my endoscopy, and they gave me the I.V., it made me feel more energized in minutes. I honestly wish I could walk around with one in the summertime. But really, this is a year long issue for me, even when I travel back home to the Northeast. Incidently, blood sugar always tests great. I don't suspect diabetes.

I just wonder what I should do if the Celiac tests are negative and all the other bloodwork is "fine". I am trying the diet, but slip up a lot. I have yet to go more than 48 hours gluten free. But I do feel a little better.


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CarlaB Enthusiast
I just wonder what I should do if the Celiac tests are negative and all the other bloodwork is "fine". I am trying the diet, but slip up a lot. I have yet to go more than 48 hours gluten free. But I do feel a little better.

Anemia is common with celiac, but not necessary, especially with eating the foods you describe and supplementing.

When the tests come back, if they're negative, then post about it asking for suggestions, but don't worry about that unless it happens. Until that point, try harder to be totally gluten-free so by the time you get the results you know if you have had any response to the diet.

Do you use salt? I have never really eaten a lot of junk food and never used much salt. I had that same dehyration problem you describe. On days I start feeling dehydrated, I add just a little salt to my water and it helps. I also regularly salt my food. On blood tests, my sodium still tests on the low side of normal. I use good quality sea salt with all the other minerals still in tact (real salt, Himalayan salt, etc.).

holdthegluten Rising Star

I have celiac and have never been anemic. Its very common to be anemic because of absorption problems, but not always the case.

grey Explorer

sneezydiva

Absolutely. For that matter, you can be low on pretty every other vitamin and mineral and not be traditionally anemic with super low iron! I know that I am occasionally anemic, but my other vitamin deficiencies are far, far more severe. You can have the symptoms tradl associated w/ anemic from other deficiencies too (like fatigue and weakness) - B12 is a common one. Also, there's a different between being low or borderline on the traditional tests for anemia and being lower than what reflects true health for your body.

My electrolytes were very seriously out of whack recently; I spent a week on an IV. Celiac can definately make it harder to keep them in proportion too. Basically, it causes all of your body chemistry to become imbalanced and inefficient.

grey Explorer

CarlaB - Do you avoid iodized salt? Salting the water is brilliant and sounds easy to digest too. thanks

Anemia is common with celiac, but not necessary, especially with eating the foods you describe and supplementing.

When the tests come back, if they're negative, then post about it asking for suggestions, but don't worry about that unless it happens. Until that point, try harder to be totally gluten-free so by the time you get the results you know if you have had any response to the diet.

Do you use salt? I have never really eaten a lot of junk food and never used much salt. I had that same dehyration problem you describe. On days I start feeling dehydrated, I add just a little salt to my water and it helps. I also regularly salt my food. On blood tests, my sodium still tests on the low side of normal. I use good quality sea salt with all the other minerals still in tact (real salt, Himalayan salt, etc.).

Rosewynde Rookie

Your symptoms are a lot like mine. I went ahead and did the Gluten Free diet, with my docs permission, while they were doing the tests. I felt better within a week. I can't gaurntee you'll get better that quick, but it's worth a try. At the very least I doubt it'd hurt. I'd definitely suggest staying with a multivitamin a day, just make sure it's gluten free ; D

I also want to suggest an alternative to sports drinks for electrolytes. They're called Thermotabs, a buffered salt tab for heat fatigue. I use them for electrolytes when I want to avoid the sugar in Gatorade or other sports drinks. The directions my mom gave me was to put one in your mouth and if it tastes salty you don't need it. If it has no taste at all then your body needs it, drink plenty of water along with it. This is an over the counter med but make sure to read the directions thoroughly, I'm not a doctor ; D

blueeyedmanda Community Regular

I am not anemic. So you can be one but not the other.


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CarlaB Enthusiast
CarlaB - Do you avoid iodized salt? Salting the water is brilliant and sounds easy to digest too. thanks

Yes, I use pure sea salt with as little processing as possible. It's not the iodine I'm trying to avoid ... we need it ... it's the processed salt that is so bad for you. The good stuff will have other minerals in small amounts. Real Salt or Himalayan salt is the best.

Salting the water makes it an electrolyte solution, where if you just eat the salt, it's not necessarily that way. I still salt my food, but if I feel dehydrated, the salted water helps.

My daughter was ill after being out in the sun/heat. The next morning she still felt bad and had commented on how dehydrated she felt, yet she had been drinking a ton of water. I told her to salt some water, and she felt better after that.

sneezydiva Apprentice

Thank you all for your replies. CarlaB, I had some Kosher salt and have tried it, and already it seems to be helping. Rosewynde, I will defintely go get some thermotabs.

Thanks all for reassurng me. I know I'm putting the cart before the horse without knowing my test results. I've just have felt so crappy for so long, and all the CBC's I've had are always fine. I'm just so sure that I am at the very least gluten intolerant, and I'm so worried about the false negative. I know responding to the diet is the ultimate test. I guess I just need some reassurance that I'm not crazy for wanting to try ths diet regardless of what the doctor says.

  • 3 years later...
spunner77 Newbie

Hi there, I am actually really relieved to read your post, I have just started researching celiac disease and wheat allergy b/c I have had many of the symptoms for years without knowing what was wrong. I was b12 defficiant years ago and the doctors didn't know why. And just a few days ago all of my bloodwork came back fine, I'm thinking this is b/c I have been taking b12 and multi-vitamins for about 3 years now, but my doctor doesn"t want to send me to be tested for neither wheat allergy or celiac disease b/c I am not anemic and the rest of my vitamin levels are fine. Now I am lost and sure where to turn or what to do. Any suggestions would be great thanks.

ravenwoodglass Mentor

Hi there, I am actually really relieved to read your post, I have just started researching celiac disease and wheat allergy b/c I have had many of the symptoms for years without knowing what was wrong. I was b12 defficiant years ago and the doctors didn't know why. And just a few days ago all of my bloodwork came back fine, I'm thinking this is b/c I have been taking b12 and multi-vitamins for about 3 years now, but my doctor doesn"t want to send me to be tested for neither wheat allergy or celiac disease b/c I am not anemic and the rest of my vitamin levels are fine. Now I am lost and sure where to turn or what to do. Any suggestions would be great thanks.

Either find a different doctor or ask for a second opinion from a GI or another doctor if you really like the one you have now. If you are female sometimes your OB/GYN might agree to order the panel for you. If you can be compliant without a formal diagnosis you don't need a doctors permission to be gluten free.

nora-n Rookie

Also, some have hemochromatosis and celiac at the same time, especially people with celtic ancestors. These genes follow each other.

I think anemia is often jsut the end stage of celiac, or close to it.

My ferritin was 70 before my gluten issues, then 35 during, and is now at 100.

But gluten triggered my hashimotos antibodies, DH antibodies, and gliadin antibodies which attack the brain.

There is a lot of damage done before people are anemic.

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    • trents
      Yes, it does. And joint pain is another celiac symptom that is now well-recognized. 
    • ThomasA55
      Does my iron loss sound like celiac to you?
    • trents
      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it is important for you to get tested is that many or most people who don't have a formal diagnosis find it difficult to be consistent with the gluten-free diet. They find ways to rationalize that their symptoms are due to something other than celiac disease . . . especially when it becomes socially limiting.  The other factor here is by being inconsistent with the gluten free diet, assuming you do have celiac disease, you are likely causing slow, incremental damage to your gut, even though you are largely asymptomatic. It can take years for that damage to get to the point where it results in spinoff health problems. Concerning genetic testing, it can't be used for diagnosis, at least not definitively. Somewhere between 30 and 40% of the general population will have one or both of the two genes known to be associated with the development of active celiac disease. Yet, only about 1% of the general population will develop active celiac disease. But the genetic testing can be used as a rule out for celiac disease if you don't have either gene. But even so, that doesn't eliminate the possibility of having NCGS (Non Celiac Gluten Sensitivity).
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    • trents
      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
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