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Blood Test Normal


mark t

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mark t Newbie

Well, my self diagnosis was incorrect. They show I do not have an allergy to wheat.(baring the possibility of a false negative). Doing the biopsy would make the crash complete, so I think I will wait. And just stay with the diet and see if it makes a differance I wanted to say how friendly and supportive you guys are. I am very grateful for that.

Thanks,

Mark


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KaitiUSA Enthusiast
Well, my self diagnosis was incorrect.  They show I do not have an allergy to wheat.(baring the possibility of a false negative).  Doing the biopsy would make the crash complete, so I think I will wait. And just stay with the diet and see if it makes a differance I wanted to say how friendly and supportive you guys are.  I am very grateful for that.

Thanks,

Mark

<{POST_SNAPBACK}>

Celiac is not an allergy so celiac would not pick up on allergy testing.

Nevadan Contributor

Mark,

Do you know specifically what tests you just had done?

As Kaiti just said, gluten sensitivity isn't an allergy.

George

mark t Newbie

Perhaps my choice of words might be wrong. I asked my endo for the blood test for celiac, It was my understanding that the blood test showed any lack of nutrients in the blood that would indicate a gluten intolerance. None showed. Perhaps allergy is the wrong word, but no matter, the blood test was negative, so the result is the same.

Mark

KaitiUSA Enthusiast
Perhaps my choice of words might be wrong.  I asked my endo for the blood test for celiac,  It was my understanding that the blood test showed any lack of nutrients in the blood that would indicate a gluten intolerance. None showed.  Perhaps allergy is the wrong word, but no matter, the blood test was negative, so the result is the same.

Mark

<{POST_SNAPBACK}>

any lack of nutrients would indicate a gluten problem? I mean it can be a symptom but if it is in beginning stages where you don't have that problem yet they may show up fine. You really need to have a celiac panel done in order to get proper results for celiac.

Rachel--24 Collaborator

I'm confused. :unsure:

Were they checking for vitamin deficiencies or Celiac Disease? What tests did they run? If they ran the right tests they'd be looking for antibodies to gluten not lack of nutrients due to gluten.

mark t Newbie

I don't know. I asked for blood work to check my blood for celiac disease. My endo, who is at the top of her game, I trust her to make the intial check. She is familar with the connection of celiac and type 1 diabetesShe gave me the option of going to digestive physician. I was only reading on the internet that the blood test checks for nutrients lacking in the blood to check for gluten intolerance. It didn't say anything about vitamin diffeciency. I assume that is what was done, but does it really matter? If not eating any gluten makes me feel better, I will do that, I can then judge how I feel as to whether it is beneficial or pointless.

After 36 years of diabetes, I learrned a valuable lesson about eating, if the fuel is making you sick eat something else. Eating wheat or not is irrelevant. Being as healthy as one can possibly be is all that matters, if you can be more healthy by what you eat, it is such a simple choice. I will be gluten free if needed. I trust my body to tell me.

Mark


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Nevadan Contributor
I don't know.  I asked for blood work to check my blood for celiac disease.  My endo, who is at the top of her game, I trust her to make the intial check.  to tell me.

Mark

<{POST_SNAPBACK}>

I hate to say it, but it doesn't take much reading on this forum to find that dr's are generally pretty clueless when it comes to gluten sensitivity testing. You should get a copy of the lab work that was done so you can see for yourself what tests were done - I wouldn't trust that to any dr. Check some of Kaiti's previous posts for a list of the full celiac disease panel of tests and compare it to what you just had done.

I like your attitude re going gluten-free. It's only an inconvenience and if it yields better health it's worth it.

Good luck.

George

blondehart Newbie

I diagnosed myself as gluten intolerant, but couldn't get into a specialist until December. My Dr. feels that I might be celiac disease, but as soon as I realized what was making me sick, I stopped eating gluten. I feel as if I am between a rock & a hard place. I can't get an accurate diagnoses w/out eating gluten, & I am afraid to eat it. Help..... :o

Nevadan Contributor
I diagnosed myself as gluten intolerant, but couldn't get into a specialist until December.  My Dr. feels that I might be celiac disease, but as soon as I realized what was making me sick, I stopped eating gluten. I feel as if I am between a rock & a hard place. I can't get an accurate diagnoses w/out eating gluten, & I am afraid to eat it.  Help..... :o

<{POST_SNAPBACK}>

First, I assume you self-diagnosed by dietary challenge: went gluten-free and saw some symptoms improve and maybe tried gluten again and saw the symptoms worsen. Dietary challenge (your self-diagnosis) is a valid, and perhaps the best, form of diagnosis. But if you still think you need a "professional" dx, you might want to look into Enterolab. They specialize in gluten sensitive testing using a stool sample which you provide from the privacy of your home. They claim their testing does not require the reintroduction of gluten if you have only been gluten-free for 2-3 months. They will also do a DNA test which can indicate if you are likely to have celiac disease, non-celiac disease gluten sensitivity, or neither. The DNA test doesn't prove you have anything, but it indicates if you are at risk. Be forewarned that Enterolab's testing is somewhat controversial in the med profession, mainly because the testing procedures have not been published for peer review, a standard part of the scientific method.

With that said, I self-diagnosed with diet challenges, then did the Enterolab testing about 6 wks later. Enterolab results confirmed what I already knew from my self testing plus their DNA analysis found I have two HLA-DQ1 genes which mean I'm not likely to develop villi damage common to celiac disease; however, I am gluten sensitive and subject to numerous other problems, many of them neurological (a few of which I have mild cases of), if I were to return to eating gluten.

The latest thinking is that celiac disease (villi damage) is only one presentation of gluten sensitivity ("the tip of the iceberg") so even if your celiac disease tests were to come out negative, you might still be suffering from gluten sensitivity. I recommend reading "Dangerous Grains" by Braly & Hoggan if you want to learn more about non-celiac disease gluten sensitivity.

Good luck!

George

LLCoolJD Newbie

I had an antibody blood test when my symptoms were in their early stages. It came back negative. Over time, the symptoms worsened, and the gluten-free diet did the trick. I'm under the impression that the blood test can give false negatives.

Going on a gluten free diet for 2-4 weeks should tell you better than any antibody test whether you have a gluten intolerance.

blondehart Newbie

thank you...this is good advice & I feel better already.

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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