Celiac Panel Results In...

[portrgirl]

I finally got all of my test results in. It looks like everything is right smack dab in the middle of the normal ranges. I don't know why my tTG test results weren't there but I'll be talking to my doctor to find out. From what I've researched, nothing is even showing a possibility for a gluten sensitivity (unless I have incorrect information).

IgG 879 (normal range 751-1600)

IgA 173 (normal range 82-453)

IgM 151 (normal range 46-304)

EMA negative

Does anyone have any comments/suggestions/opinions?

I have to say, I'm kinda bummed. I was hoping that this would be what's up with me. Instead, now I feel like I'm just back to the IBS label and learning to ignore it all again. Before the tests, my doctor said that he wanted me to try the diet for a month even if the results were all negative for Celiac but why would that help if I'm not? I should be talking to him later today though.

[lonewolf]

Sorry you didn't get the answer you were hoping for. I'm not super knowledgeable about all the tests (I'm sure others will chime in), but I think they solely test for Celiac, not non-Celiac gluten sensitivity. You CAN be sensitive to gluten without having Celiac Disease.

Two of my kids tested negative on their celiac panels, but have responded phenomenally well to the gluten-free diet. I have had gene testing done, which shows I don't have either of the main Celiac genes, but there's no doubt that I am gluten intolerant.

BTW - I was diagnosed with IBS 10 years before anyone suggested that food might be a problem. When I finally discovered that I was allergic/intolerant/sensitive to wheat/gluten, dairy, eggs and soy, my "IBS" completely disappeared.

There is research that suggests that around 30% of the population is sensitive to gluten, but only 1% has celiac disease, so 29% of the population gluten intolerant, but won't test positive on traditional tests.

PLEASE try the diet! It can't possibly hurt you and it still might be your answer.

[Ursa Major]

Liz is right, and you have an excellent doctor, to actually suggest trying the diet, even if your test results are negative. He understands that gluten intolerance doesn't always result in 'classic' celiac disease, and that the testing can only rule in gluten intolerance/celiac disease, but it can't rule it out.

Also, maybe your villi aren't damaged enough yet for you to have enough antibodies to test positive, which is good, not bad.

Please try the diet, and give it at least a month to see if it helps. It's a healthy diet, and might help you more than you can imagine. If you still won't get well, you may have to also eliminate dairy, it can be a huge problem, especially at the beginning.

[chrissy]

just becuase you don't have celiac, doesn't mean you don't have a gluten problem. it is great that your doc is aware that other people, besides celiacs, can have gluten problems. see what the diet does for you.

[portrgirl]

Well, unfortunately, my doctor is now saying that I have no reason to try a gluten-free diet because all of the test results came up negative. I asked about gluten sensitivity and he said there's "no way to test for a gluten allergy."

He does want me to be on a wheat-free diet for a month as my allergy skin test showed positive for a moderate wheat allergy. He said that the two weeks I tried it before wasn't long enough to show any improvement in the areas that I have problems with (he knows about my GI problems but none of the other issues).

I have a question for you all. The only thing I eat that's contains gluten other than wheat is beer, which I've stopped drinking since my previous wheat elimination because I found it made me feel really strange, tired, very moody and stuffy (which I thought was normal). Am I correct in thinking that as I don't eat rye bread (always has wheat flour) or store boughten soups with barley (usually thickened with wheat) or are there other sources of gluten that I'm not realizing?

[tarnalberry]

  portrgirl said:

Am I correct in thinking that as I don't eat rye bread (always has wheat flour) or store boughten soups with barley (usually thickened with wheat) or are there other sources of gluten that I'm not realizing?

Unfortunately, wheat hides in lots of things.

Do you use soy sauce? It probably has wheat in it.

Do you use broth or boullion? Many, though by no means even most, have gluten.

Every try Rice Dream? It has gluten in it.

Eat Rice Crispies, Corn Chex, or other non-wheat based mainstream cereals? They have gluten.

Makeup, lotion, vitamins, medications, and so forth can all contain gluten as well, though not all do.

It can hide anywhere!

[Nantzie]

All my test results were negative.

After I went gluten-free, 18 years of IBS-type symptoms, a lifetime of psychological symptoms (anxiety, insomnia, nightmares, irritability) and 3 years of mobility issues that were so painful that I could barely walk and couldn't really take adequate care of my kids, went away.

If it weren't for me taking it upon myself to just give it a shot, I firmly believe I'd be in a wheelchair by now.

Please, please, please try the gluten-free diet. It's worth a shot. You will never know until you try.

If you just give it 100% for a while, at least you will know for sure if it helps or it doesn't. In my experience I am extremely sensitive to gluten and even with slight cross-contamination my symptoms come back. I have to be equally as vigilant and careful as anyone with classic celiac. My advice when someone wants to try the gluten-free diet is to try it as if you have been diagnosed with celiac, and just see what happens.

There are dozens of people here who don't have classic celiac, but whose lives are improved by going gluten-free.

I hope you try the diet, and I hope it helps you feel better soon.

Nancy

[Jprock]

I too received all negative test results, with the exception of of being DQ8 positive. My brother was a juvenile diabetic, my mother had the worst stomach, as well as psoriasis, and I started having stomach issues at about 15 years of age, as well as being asthmatic as a young child. I do remember my mom saying that she had to feed me pre-digested formula as a baby. Biopsy results were negative, (I had to change gastros) as was capsule endoscopy. I had been 'gluten-lite' since first reading about celiac disease in August. I had to try anything to feel better, and even though I knew you weren't supposed to go gluten-free until a diagnosis was made, I did. I went completely gluten-free in September, and I feel like I have my life back. For over two years I was a mess, my gp and gastro guy kept throwing more meds at me. Since being gluten-free, I'm slowly getting off some of the meds, including blood pressure meds.

I tested with Enterolab, and all of those results came back positive for gluten intolerance. Also discovered that I had intolerances for soy and casein, although eggs were fine. I have avoided eggs my whole life since I thought that was the problem, and it blew my mind to find out it had always been the wheat. I now eat food with eggs and products with mayo, and I haven't had one problem. Not a day goes by that I don't marvel at what gluten does to me! And I have a really hard time accepting that not one of my previous doctors even mentioned the word gluten, celiac, or wheat. Amazing.

Anyway, my new gastro guy is treating me as celiac because of my incredibly positive response to the gluten-free diet. At the moment, we're calling it non-celliac gluten sensitivity, and although he's pretty good, he totally discounted Enterolab.

I've done tons of research, and I've encouraged those close to me to try gluten-free. My sister and friend are having very positive results as well. After all, it really is about feeling 'normal,' and I have wholeheartedly embraced the gluten-free diet. I had the best Christmas in three years, cooked a great gluten-free rib roast dinner with Yorkshire pudding, and feel like a million bucks. And this from somebody who could barely function for more than two years.

Definitely try the diet. It's terrific.

[portrgirl]

Thank you all so very much for the responses!

I've been feeling so beat down, overwhelmed and unsure about all of this. I was so happy when I looked up what my doctor thought I had (celiac disease) and found that I had so many of the symptoms with such an "easy" cure. I was (and am) really let down when all of the blood tests came back negative. I can't afford an endoscopy, especially if my insurance won't cover it because of the blood test results.

I'll be all for trying the diet one minute and then go back being not sure. Thankfully my boyfriend is very supportive; I just can't get over not having the diagnosis. I suppose that if my improvements on the diet are so great, it wouldn't matter what I have, as long as I continue feeling well. But to see if I have those improvements, I need to try the diet. Why do I feel so stuck on all of this.

[Nancym]

Wheat is very powerfully addictive. Although I found it was easier to give up than cigarettes, it still had some withdrawl things going along with it. Just the thought of giving it up made me kind of sad for a little while.

Hey, what've you got to lose from trying the diet, other than dealing with withdrawls for a couple of days? I mean, you might have the answer to your IBS here but you'll never know unless you try the diet.

As far as hidden sources of wheat, you've got to read labels like mad. Eating out at restaurants is really chancey so you have to learn how to do that. Things like soy sauce, malt, malt vinegar, chinese/japanese food have wheat in them.

I do find it odd that if you've tested postive to a wheat allergy your doctor hasn't warned you off wheat.

[portrgirl]

  Nancym said:

Wheat is very powerfully addictive. Although I found it was easier to give up than cigarettes, it still had some withdrawl things going along with it. Just the thought of giving it up made me kind of sad for a little while.

Hey, what've you got to lose from trying the diet, other than dealing with withdrawls for a couple of days? I mean, you might have the answer to your IBS here but you'll never know unless you try the diet.

As far as hidden sources of wheat, you've got to read labels like mad. Eating out at restaurants is really chancey so you have to learn how to do that. Things like soy sauce, malt, malt vinegar, chinese/japanese food have wheat in them.

I do find it odd that if you've tested postive to a wheat allergy your doctor hasn't warned you off wheat.

Actually, both allergists have. The first one I saw seemed concerned about it and thought that it might be causing my IBS. She told me to take wheat out for a week to see if anything improved. I did two weeks but didn't see any improvements - I just felt a bit different mentally. The allergist that I switched to now (he was the one who though I should be tested for celiac) also thinks wheat is what's causing my IBS but says that it'd take 3-4 weeks on the diet before I'd even see an improvement. He wanted me to start it after the holidays (now).

When I did the two weeks off of wheat, I had some really bad cravings and withdrawl as well.

Barley also showed up as a slight allergy but I haven't been told to avoid it.

What I find interesting, is that I can't find anywhere online (WedMD, etc.) that says that food allergies can cause my symptoms or even just GI symptoms other than diarreah.

[Nancym]

  portrgirl said:

What I find interesting, is that I can't find anywhere online (WedMD, etc.) that says that food allergies can cause my symptoms or even just GI symptoms other than diarreah.

The NIH does:

  Quote

Fasting tests. To find out if a food intolerance or allergy is causing the diarrhea, the doctor may ask you to avoid lactose (found in milk products), carbohydrates, wheat, or other foods to see whether the diarrhea responds to a change in diet.

Open Original Shared Link

[portrgirl]

  Nancym said:

The NIH does:

Open Original Shared Link

Sorry, I wasn't very clear. I meant any symptoms other than diarrhea. I rarely have that but I'm chronically constipated, which only seems to be mentioned with IBS, Celiac and non-celiac gluten intolerance.

[GlutenWrangler]

Definitely try the diet before going back to IBS