Eating Gluten To Get Tested

[sarah86]

Hi, almost a month ago I was watching a show that had Elizabeth Hasselbeck talking about her book and Celiac Disease. I had never heard of this and didn't know what gluten was. I noticed alot of the symptoms she talked about were the same as I have.

I would have gas pains so bad at times that it felt like pins and needles were being stuck in me and the only relief I got was to lay on my side. I had diarrhea, bloating, gas and would also have headaches that were getting worse over time. I felt tired and couldn't seem to concentrate.

About a year ago I also had a spot that looked like a whitehead pimple come up on the bottom of my right foot that ended up spreading into a cyst as big in diameter as a golf ball.... maybe a little bigger that had clear sticky liquid in it (sounds gross, I know). I couldn't walk on it and it took at least 4 months before I could, but even after it healed I still had little read spots that would come up and then form the same whitehead... sometimes several at once. Then it showed up between my toes, sometimes on my hand or arm and would itch and burn something terrible. I learned somewhat how to deal with it, but it was frustrating not knowing what was causing it.

When I had originally went to the doctor he said I had stepped on something and it got infected. Another doctors said I had been bit by a brown recluse, but I knew it wasn't any of those things, especially since I've now had this problem going on a year now.

Anyway, after hearing Elizabeth talk about celiac disease I wondered if there could be a connection, so I decided to get off all gluten. As a result, all stomach problems and headaches are gone, I've had more energy and..... the places on my foot etc are gone! I've had no more outbreaks and the ones I had are healing completely up.... no itching and no burning. I'm amazed!

The only problem, is that I've just recently found out that in order to be diagnosed for celiac disease I would need to get back on gluten for several moths and I'm not sure I want to do that, given that in just almost a month I've had a complete turn-around. Me and my hubby have been TTC for several years and have not been able to do to unexplained infertility. I found out that the culprit could be gluten, so I'm not wanting to get back on it.

What do I do now? Is there a way that I can be diagnosed without having to get back on gluten for the blood test?

I honestly believe my mother had celiac disease. She passed away last Thanksgiving morning 2008, so she can't be tested, but if I had known about celiac disease then I would have had her tested because she had just about every symptom of celiac disease for years.... severe stomach problems, gas, bloating, diarrhea. sores in the mouth, overgrowth of yeast, headaches, anxiety, depression, severe weight loss (she weight next to nothing before she died), osteoporosis, hair loss (we had to buy her a wig for her funeral) etc etc. She had been diagnosed with IBS at one point, but I think she had celiac disease, but was never one time diagnosed.

If she had celiac disease, then it would be understandable that I would probably have it, but I was hoping there was a way I could be tested without having to go back on gluten again.

Sorry this is so lengthy, but I wanted to give as much info as possible to give an idea where I'm coming from. Any insight would be greatly appreciated.

Thanks a bunch,

Sarah

[FMcGee]

I think you could get a genetic test done, which would tell you whether you carry the gene but not whether you're having an active immune response, without having to go back on gluten. The other tests require you to have been eating gluten for at least six weeks, is my understanding according to what my doctor told me.

I have a friend who never got tested, and just stopped eating gluten. She said it cleared up her symptoms, which is great, but I don't think she actually has celiac disease. She eats regular old Quaker or store brand oatmeal every day with no reaction, she eats at restaurants without worrying about cross-contamination and has said it's never been a problem, etc. If she feels better, that's probably all that matters, but I'm neurotic and need to know for sure, so I got tested, and I do indeed have celiac. So, you could take either approach, and people here will have different recommendations for you, so you'll just have to figure out what's right for you. Your insurance might help in your decision-making process, in fact. Mine required the positive biopsy to go on and do further tests, like bone scanning. Everyone's policy is different and it might make sense for you to talk to someone about that.

Good luck! I'm glad you feel so much better!

[sarahk47]

What do I do now? Is there a way that I can be diagnosed without having to get back on gluten for the blood test?

There's the gene test, which will only tell you if you carry the gene for celiac--it won't tell you if you're genetically predisposed to gluten intolerance w/o official celiac. There is also Enterolab out of Dallas, which tests stool samples to determine all kinds of food sensitivities, even after you've cut something out of your diet.

I did the gluten challenge because I wanted my docs to have no issues w/ testing my vitamin levels and screening for celiac-related diseases, and I don't recommend it. Others do recommend it so you can get your gold standard diagnosis, and I get that. I wanted that, too, for the reasons I listed previously and so my family, all with stomach/gall bladder problems, would get tested--but after going through the three months of making myself sick, I wish I hadn't done it. During my challenge, I also became lactose intolerant, and that is still going strong almost two years later. On top of that, my biopsy came back clean. But if I eat gluten, I get all of the symptoms you describe (not the cyst thing) and several others as well, so my primary doc has dx me w/ "celiac, or at least gluten intolerance." She's great, so she actually does annual blood levels to make sure I'm not deficient in anything, even w/ the clean biopsy.

Reading about your symptoms... I was off gluten for three months before my gluten challenge, and it's the best I ever felt in my life. After the challenge, I can't seem to get back to how well I felt then, and I'm still figuring out new food problems. I would send a sample to Enterolab if it were me.

Whatever you decide, I wish you the best of luck!

[jcc]

In the end, one's response to the diet may be the best test of all.

For others reading along who may be considering a dietary trial, it really is best to do at least the blood testing before experimenting with diet.... if you think you will ever want to seek an official dx. Then no matter what the results... I always recommend a dietary trial... because far too many people have problems with gluten despite negative celiac disease testing. I have heard of others who feel their condition worsened with the challenge.

You could try ordering up the blood tests quickly, although antibodies can drop off rapidly. A positive would be meaningful, but a negative could be false. If you opt to do a gluten challenge, it should be for 4- 8 weeks. And, if the results are negative, they suggest continuing the challenge and retest at 6 months and a year.

So... if you've already seen improvement... and would return to a gluten free diet no matter what... is it worth the official proclamation? Only you can decide, but nobody needs a doctors prescription to make dietary changes.

The genetic testing... you could do... but be careful how you read the results. Most doctors will tell you that you can't have celiac disease without having one of the main HLA types (HLA DQ2 or HLA DQ8), and they usually only look for those two specific types. My family has HLA DQ1. I have known several biopsy proven celiacs with this type, but it is also associated with gluten sensitivity without villous atrophy. This type does seem to be more common in those with some neurological complications, like my daughter, but she also had classic diarrhea and skin problems.

Enterolab does not limit their testing to HLADQ2 or DQ8, so if you decide to go that route of genetic testing... I'd recommend doing the cheek swab through Enterolab. BUT... gluten sensitivity is possible in just about genetic type... so it may be an interesting thing to know... but may not tell you as much as you hope. Just don't let anyone tell you that you can't have celiac disease or gluten sensitivity without having HLA DQ2 or DQ8.

Here are some references for you... on how quickly blood antibodies fall and the duration of a gluten challenge. Hope this helps!

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RESULTS: Twenty patients could be followed during GFD and all antibody titres fell sharply within 1 month after introduction of a GFD and continued to decline during the survey interval. Thirty days after beginning the diet only 58, 84, 74 and 53% of all patients had positive antibody levels of tTGrh, tTGgp, EmA and AGA respectively. CONCLUSIONS: As the antibodies used to confirm the diagnosis of celiac disease fall rapidly and continue to decline following the introduction of a GFD, it is important that health care providers carefully inquire about the possibility of self-prescribed diets before patients sought medical attention.

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Are you scheduled for a biopsy? Are you eating gluten?

Any changes in your diet can affect the accuracy of your biopsy results. It is necessary for you to be eating gluten every day for at least 4-8 weeks before the procedure. If you are scheduled for a biopsy and are not eating gluten, talk to your doctor about what is necessary to obtain accurate results. If you have a biopsy and have eaten gluten only a short time before the test, you and your physician will not know if a negative test result is accurate or due to your diet.

Cara