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How Did You Find Out You Were Gluten Intolerant?

tlcmel

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tlcmel Rookie
tlcmel
Posted

hi,

I think gluten my be the reason why i suffer from constipation, bloating, and flatulence. Well, i just took the test for it yesterday and have to wait from 3 days before the results. I was reading on the internet about how most postive results from blood tests are a result of SEVERE damage. Now what if it's negative but my symptoms are STILL related to gluten. I haven't been eating bread, or pasta but did have pizza the other day. BUt gluten is in EVERYTHING and i plan on trying the whole gluten-free diet even if it's negaive

My queston is......

What happened to you, or how did you know that you were a celiac or intolorant to gluten??

Thanks

Mel

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KaitiUSA Enthusiast
KaitiUSA
Posted

Which blood tests did you have done?

I was diagnosed through blood tests. My tTG was more then double what it should be and I also have one of the main genes for celiac(HLA-DQ2)

You should get the celiac panel including the following:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

The tTG and the EMA are the best 2 tests for celiac...they are very specific. The IgA and IgG are not as reliable and should not be done by themselves to rely on alone.

If these tests you have done come back negative, gluten could still be your problem. You could just have an intolerance that has not progressed to celiac yet but it very well could. Listen to your body.

Do not go gluten free until after testing because this will interfere with test results.

Carriefaith Enthusiast
Carriefaith
Posted

Many people go about it different ways. Some people get the blood tests, others biopsy, some do the dietary challenge, and many do a combination or all of the different tests. You can also test to see if you have the celiac gene. It's best to decide with your doctor what is the best route for you. I personally, had one positive blood test (tissue transglutamase), a postive biopsy, and felt almoat 100% better after about 1 year on the gluten-free diet.

julie5914 Contributor
julie5914
Posted

I was diagnosed by blood test, primarily the EMA. I was feeling horrible all of the time. It has not been a week yet for me gluten free, but I am feeling a little better already. Hope your results help you out.

jenvan Collaborator
jenvan
Posted

I had positive blood work and a biopsy.

PreOptMegs Explorer
PreOptMegs
Posted

I was finally diagnosed with non-celiac gluten intolerance. My biopsy was negative, but my bloodwork was positive and everything has been positive with my dietary change. I went from having an athletic, lean body, to being absolutely bloated all of the time, fatigue, extremely gassy.... the list goes on. I basically knew after gaining 12 lbs overnight one time that something was wrong. I told my doctor I think it had something to do with all of the wheat I was eating, because that seemed to make it that much worse, so she did the IgG /IgA blood test and it was emphatically positive. I basically just knew from the way gluten made my body morph.

tlcmel Rookie
tlcmel
Posted
  • Author

:o Okay,

My results are postive but not serious the secretary said. The norm (Igg) is 20 she said, and mine was 38. She didn't seem too knowledgeable and I was shopping at the time so their gonna get back to me. She didin't even mention anything about going on a gluten free diet or anything. Is 38 igg high?? thanks

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    • trents
      Bob red mill gluten free oats

      By trents · Posted

      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.
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      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
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      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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