In And Out Of Denial -- And You?

[velveeta]

Hey everyone,

You will probably think I am crazy when you read this. About 10 or so years ago, Dr. Fine from Enterolab was doing screenings at a mall in Dallas. So I did one to get a free pen or something. Anyway, they contacted me and said I had some genetic markers for gluten sensitivity, which I had never heard of. And I had never really had any health problems, either. So, anyway, they asked me to come in and give a ... stool sample. Yikes! So, I did, and the Dr. called me and said that I have "celiac disease." Again, I had never heard of it. So, I called my mother (a nurse) and told her about all this. She told me it was a disease where "all you can eat is Mexican food." and that I didn't have it because you have to be very, very thin. I have always been slender, but not ultra-skinny or anything. Just the thin side of normal. And, again, no symptoms really. So, I was just like "whatever" and kept right on eating wheat... blissfully!

Anyhow, now I do have a lot of problems -- arthritis in my hands and severe, persistent nausea throughout both of my pregnancies that did resolve after the births. Are there any of you out there that don't have SUPER severe symptoms? I have only been gluten-free for two weeks. The acupuncturist told us to do it for my two children who have had severe symptoms. I am motivated to keep our home gluten-free for my kids, but it is almost like I don't believe it for me, even though I am sure my kids got it from me! I know it is crazy. Can anyone relate?

I had no trouble getting pregnant, and my pregnancies and births were very healthy and normal (except for insane nausea). Oh, and I didn't have arthritis until a tick bite last year. I have had a lot of antibiotics for that, but it never went away completely. I have peripheral neuropathy, which I try to keep at bay with b complex supplements, and my bones are on the very thin side of thin.

Do I really have this disease?

[ENF]

The doctor should not have told you that you have Celiac Disease, because the diagnosis can't be made by a stool sample. The test can only show that you had a reaction to gluten, and it is possible that you have Celiac.

You could get blood tests, and endoscopy, for yourself and your children if you want a diagnosis. For many, a positive response from the gluten-free diet is enough proof.

[velveeta]

The doctor should not have told you that you have Celiac Disease, because the diagnosis can't be made by a stool sample. The test can only show that you had a reaction to gluten, and it is possible that you have Celiac.

You could get blood tests, and endoscopy, for yourself and your children if you want a diagnosis. For many, a positive response from the gluten-free diet is enough proof.

Oh, well, I guess I was paraphrasing. It has been over 10 years, after all. I just remember that he warned me about Celiac based on my genotype, and that I should adopt a gluten-free diet. I can't remember whether he said "you have a diagnosis of celiac." It was and still is incredibly overwhelming.

I actually don't have insurance for a battery of tests, especially after thousands spent last year on tick borne illness testing.

I guess what I was asking is whether there are those of you whose symptoms are somewhat tolerable when you consume gluten, meaning that it is not incredibly clear cut. There is no doubt whatsoever that I am better on gluten-free than I was previously.

It is a disease that doesn't necessarily have horrible symptoms for everyone, but does have incredibly dangerous risks for everyone when gluten is consumed. I guess I am asking to hear from people who are concerned about the risk of permanent damage even though their intestinal symptoms are not as intense as others. Also, I was wondering whether there are others with a symptom portrait similar to my own.

[mamaw]

Many people show no signs of the disease while others a speck of gluten can send them to the ER. We all are different. Some see instant results with the gluten-free diet others it takes years to start ot feel better.

Others have great success with being gluten-free for loads of many other issues. Not everyone on the gluten-free diet is celiac or gluten intolerant. Ie: MS, migraines, crohn's, psorasis.

If you chose not to do more testing & are comfortable not being tested but feel better without wheat/gluten then it is a choice you have to make. Others want to know for sure so they do all the testing.Bloodwork, DNA, endo.

I do suggest getting your children tested. It is easier to have the piece of paper in hand for school for lunches !!!!

I did get a chuckle from your mother stating one can only eat Mexican food! I never heard of that one before.... but it does go to show how misunderstood this disease is by the medical profession & the general public. It is sad to see so many suffering from this & being mis-dx'd. For some it takes a rash of other dx's & ten years before they find out they have celiac. Very sad & I feel totally un called for...

Also if you are not going to do the diet 100% then I wouldn't waste your money because cheating does not work ...This lifestyle takes away the quick fixes for lunch--- stop & grab & go! It takes planning daily.

Good Luck

mamaw

[OptimisticMom42]

My 18 yr old son is also taking this whole thing oddly. Last year he was having serious mental health issues and went through a lot of medications and a hospital stay before he found a medication that worked for him in January'09. In the paper that comes with each refill, it says that this medicine blocks the brains reception of serotonin, dopamine, adrenaline, histimine and glutamate.

His blood test for celiacs came back negative (because he was on the medication?). I've asked him to try being gluten free anyway but he says he would rather just take the meds. He is paying more attention though and has said that even with the meds if he over does the gluteny foods like cheerios he has to take imodium. So now he's a Rice Chex fan.

I have spoken to him about the long term effects on his health but he is feeling better now than he has in 4 yrs so it's just not sinking in.

[JNBunnie1]

To answer the question I think you're trying to ask, yes, your symptom profile matches Celiac. Pretty much any symptom profile can match Celiac because malabsorption affects everyone differently, but yours is classic. You have peripheral neuropathy, big Celiac symptom.