Frustrated With Outcome Of Tests

[FreeportMom]

Hi All,

First time I've posted to any site! Brand new world. I'll try to keep my story short. For at least 5 years, been feeling just awful, not myself in so many ways; extremely tired all the time, lots of hair loss, aches and pains in my joints and over the last year bloating, gas, the big D - especially when I ate a multigrain oatmeal w/ barley, rye and milk products. Was getting really depressed too - was I just getting old (only 42)? Finally went in for a regular physical; mentioned all the symptoms... my doc was perplexed, but as soon as I mentioned the reaction to the oatmeal she thought Celiac and had my blood tested.

Came back positive and I started a gluten free diet right away - which I'm not sure was the right thing to do until you get an endoscopy...which I do get but after being on a gluten free diet for 6 weeks. As you can imagine, the results were negative. My GI doc said I would need to eat gluten again for at least 2 weeks and then take a more in-depth blood test, IgA, IgG and can't remember the 3rd.

So I bit the bullet and went back to my old diet and felt absolutely awful. My hubby was amazed at how fast my health declined. Had the blood tests 2.5 weeks later. On Thursday, last week I called my GI doc to discuss the results. She said negative again, but then realized the lab never did the right blood tests she asked for... I was devastated... I tortured myself for WHAT... I told my hubby & family that even if the tests come back negative that I would stay gluten-free, but I guess I really wanted to see "positive" in the results. Told my doc there is no way I am torturing myself again!

I know I am staying gluten free, but are there any tests out there where you don't need to eat gluten to find out if you indeed have Celiac? My sister has colits and my dad RA.

Thanks a bunch... read lots of the posted on this site and it has been so helpful!

[ravenwoodglass]

Hi All,

First time I've posted to any site! Brand new world. I'll try to keep my story short. For at least 5 years, been feeling just awful, not myself in so many ways; extremely tired all the time, lots of hair loss, aches and pains in my joints and over the last year bloating, gas, the big D - especially when I ate a multigrain oatmeal w/ barley, rye and milk products. Was getting really depressed too - was I just getting old (only 42)? Finally went in for a regular physical; mentioned all the symptoms... my doc was perplexed, but as soon as I mentioned the reaction to the oatmeal she thought Celiac and had my blood tested.

Came back positive and I started a gluten free diet right away - which I'm not sure was the right thing to do until you get an endoscopy...which I do get but after being on a gluten free diet for 6 weeks. As you can imagine, the results were negative. My GI doc said I would need to eat gluten again for at least 2 weeks and then take a more in-depth blood test, IgA, IgG and can't remember the 3rd.

So I bit the bullet and went back to my old diet and felt absolutely awful. My hubby was amazed at how fast my health declined. Had the blood tests 2.5 weeks later. On Thursday, last week I called my GI doc to discuss the results. She said negative again, but then realized the lab never did the right blood tests she asked for... I was devastated... I tortured myself for WHAT... I told my hubby & family that even if the tests come back negative that I would stay gluten-free, but I guess I really wanted to see "positive" in the results. Told my doc there is no way I am torturing myself again!

I know I am staying gluten free, but are there any tests out there where you don't need to eat gluten to find out if you indeed have Celiac? My sister has colits and my dad RA.

Thanks a bunch... read lots of the posted on this site and it has been so helpful!

You can go with enterolab if you still feel the need. False negatives abound with conventional testing and can lead us into a very painfilled world unless we do what you have done. A dietary exclusion and challenge. This is the best and most conclusive test you could do. IMHO. Your body has given you a clear enough answer so that even your loved ones noticed it. Welcome to the gluten free world, you have come to a great place for info and support. Ask any question you need to and feel free to vent when needed. The diet can be frustrating at first but it will be worth the changes in the long run.

[nora-n]

Hi, I just want to mention that they say that one needs to be back on gluten for at least 6 weeks, better at least 3 minths and one has to eat at least 0,3 grams of gluten per kg for positive biopsies...

I was back on gluten 5 weeks and had negative biopsies but I am not DQ2 or 8 either. I have more neuro symptoms plus the fatigue and possibly DH.

My daughter was back on gluten 6 weeks, had negative blood tests and biopsies, abut got an official diagnosis based on symptoms and a long list of symptoms/things that got better on gluten-free. Never tested genes on her. This is a country where one needs a positive biopsy to get money from the government for celiac, but she gotr an oficual diagnosis enyway because of all the symptoms. Even her graves antibodies just vanished off gluten.

nora

[hathor]

If you need a positive test result to confirm your experience on (and off) a gluten-free diet, you can go with Enterolab, as ravenwoodglass mentioned. Their gluten intolerance (not celiac) testing is supposed to be valid up to a year after going off gluten. At the same time, you could get tested for some of the other things gluten-free folks find they have problems with, like casein and soy.

This is something you can arrange for yourself, without your doctor. It is hard to get insurance reimbursement, though.

[Trillian]

I know I am staying gluten free, but are there any tests out there where you don't need to eat gluten to find out if you indeed have Celiac? My sister has colits and my dad RA.

Thanks a bunch... read lots of the posted on this site and it has been so helpful!

I had negative blood work and biopsy, but my GI and PCP doctors confirmed Celiac based on several things: I have persistent anemia, I have osteoporosis and had 3 fractures in the past 3.5 years, I have lots of other secondary symptoms of Celiac, and I improved dramatically after starting the gluten-free diet.

I am also frustrated that my official tests were negative (I've got a current thread going about that - you can check for it when you look under the post-diagnosis section). But my reaction to the diet, the fact that I'm not absorbing vitamins and minerals, as well as the DEXA bone scan that showed premenopausal osteoporosis (I'm 37) point to Celiac, so the doctors say I'm positive.

So yes, you can have other tests that will help confirm your diagnosis... get a bone scan to check for low bone density. Get a cbc and cmp to check for vitamin and mineral deficiencies (and anemia). Look at the list of secondary effects of Celiac and check if they improve when you're on the diet. All of those can prove you've got Celiac even if the standard blood test and biopsy come up negative. They did for me.

[FreeportMom]

Thank you all for your responses and words of wisdom. This site has been an incredible resource - so great to read others stories and feel like "wow, I'm not the only one".

My GI doc did give me a perscription for a bone density test... Honestly, I feel sooo much better eating gluten-free that I'm not really sure I need any further validation.

Getting late and need to go to work in the AM... Have a happy thanksgiving to all! Thank you again...

[Fiddle-Faddle]

Welcome aboard!

Sounds to me like you have your answer already. Dietary response is a valid diagnostic tool. Doesn't matter if you want to call your condition "gluten intolerance" or "celiac" or "bellybuttonitis," what's important is that gluten makes you sick. That much is obvious.

So is the answer.

Stop eating gluten.

Sounds like your sister should stop eating gluten as well.

Colitis means "inflammation of the colon." It's one of the symptoms of celiac. Rheumatoid arthritis has been shown to be triggered by gluten and also casein (the protein in milk products). RA Magazine had a feature article on that a year or two ago.

The bone density test is not necessarily just for validation. If you have not been properly absorbing nutrients (for at least as long as you have had symptoms), it's likely that you have lost bone density. Even if you have been taking calcium, you would not have absorbed it; gluten intolerance/celiac causes something called, "leaky gut," and your villi lining your intestines become damaged and are then unable to secrete lactase and are also unable to absorb nutrients from the food you eat.

[mftnchn]

I agree with these posters, also Enterolab can give you an malabsorption index. I think it is ideal to have the "golden standard" diagnosis, but many of us have the same issues you do.

Maybe there will someday be a good test that doesn't need us to "kill" ourselves eating gluten. But meantime dietary response and return of symptoms with a challenge are pretty conclusive.

Just be sure that if you don't totally clear and stay clear of symptoms that you are on top of the other possibilities, though it does take a long time to heal on the gluten-free diet. There are a small number of folk I met here who had other things going on but until they found the answers, were very gluten sensitive and thought they were celiac.

[wowzer]

You mentioned that your first blood test was positive. I would say a positive blood test is good enough for a diagnosis. I do hope that you are feeling better soon. I had negative blood work and went gluten free with positive results.

[ravenwoodglass]

Maybe there will someday be a good test that doesn't need us to "kill" ourselves eating gluten. But meantime dietary response and return of symptoms with a challenge are pretty conclusive.

There actually is testing available it just isn't commonly in use. It gives quite accurate results and does not poison us. It is also immensely less expensive than the traditional gluten challenge and endoscopy. Perhaps that is the reason US GI are so reluctant to do it.

The title is: "Local challenge of oral mucosa with gliadin in patients with coeliac disease" and came up on a google search using oral mucosa and celiac in the search bar. Just in case the link doesn't work. Take note of the date of this article. It was published in 1999, think of all the awful gluten challenges so many of us have had, including myself that could have been avoided. Oh well, how many more years?????

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[hathor]

How interesting. Have you heard of this being available anywhere other than Finland?

How common is it in Finland, do you know? I ask because I remember seeing a study recently that the reported incidence of celiac in that country has increased in recent years and no one seems to know why ...

[nora-n]

M

[Fiddle-Faddle]

My theory is that the oral mucossa test is too sensitive, they only want tests being positive when the biopisies are positive too. they do not want tests with "false positives"......

nora

But the biopsy has such a huge chance of giving a false negative!!

The way they bow down to the biopsy like it's some kind of deity, calling it "the gold standard," is just insane. It's like waiting til someone with a peanut allergy actually has a major anaphylactic reaction before diagnosing them with a peanut allergy.

Wouldn't it be better to diagnose someone BEFORE their villi are so uniformly damaged that it doesn't matter which 1/2" of the 22 feet of intestine they biopsy??>??

[nora-n]

Yes.

And they tell me that sinde I amn not DQ2 or 8 they will not pursue this celiac question no matter what (unless I come up sith something else, I guess the only thing I can come up with now is a positive DH biopsy, but I have not managed to get a referral)

[nora-n]

I was thinking, they do not want ANY false positives here in Europe, as the government gives the patients money each month for gluten-free food in some countries. Here they get about 300 dollars (more than 1600 kr) a month. This affects all testing everywhere as doctors have to have the same standards. So they can only do tests that correspond to villi damage. So the DQ1 and DQ9 and DQ7 with minimal vill damage but all kinds of other gluten symptoms get no diagnosis until they show villi damage. .....

Here they have lots of newly diagnosed DQ2's with no symptoms, just positive blood tests and biopsies......and they are allowd to eat wheat starch (the codex wheat starch) while us others with negative tests but with lots of symptoms from even trace amounts and codex wheat starch get nothing.

nora