Just Got Tested Today

[lonewolf]

I finally got in today for testing. After waiting for weeks just to get in, and worrying that I would be labeled a hypochondriac, my doctor was wonderful. She is up to date on Celiac and was surprised that I hadn't been tested for it before. I've only seen her a few times before and she was aware that I have troubles with wheat, but we had never gone more in depth than that. We both did some research before my appointment and she wanted me to have the Celiac panel done, even though I've been wheat free for almost 10 years and firmly gluten-free for about 5 weeks. I'm expecting that to be negative. She also agreed that the genetic test from Kimball Genetics would be a good test, since my insurance will pay for at least part of it and it will help me figure out if this is something I can pass on to my kids. (I do know that there are other genes that this test won't identify that can be passed on too.) I'm ready for the possibility that I don't have celiac disease, but rather some other type of gluten intolerance - all I know is I can't eat gluten.

But I do have a question for all of you with much more knowledge and experience. (I know that this has been touched on in other posts.) If I test negative for everything and don't have either of the celiac genes, is it as important to completely eliminate EVERY little speck of gluten? Seriously, there is a huge difference between being gluten free and watching every morsal of food that might have even touched something with gluten in it. I know that many of you have to be that careful or you have horrible symptoms, but I don't think I have such severe reactions. I haven't knowingly ingested even a crumb for the past 5 weeks, so I might react more strongly if/when I do. In the past, I only noticed reactions to significant amounts - like eating a whole spelt pancake or cookie. Do any of you who are gluten intolerant, but not Celiac react less violently that people with true celiac disease?

Liz

[VydorScope]

If you have Celiac, then its all or nothing. Wether or not you react is NOT A GOOD TEST. If you have celiac, every crumb does damage, wether or not you "react" to it.

If you do not have Celiac, then why do you react to wheat? Have you been tested for an alergy?

[lonewolf]

If you have Celiac, then its all or nothing. Wether or not you react is NOT A GOOD TEST. If you have celiac, every crumb does damage, wether or not you "react" to it.

If you do not have Celiac, then why do you react to wheat? Have you been tested for an alergy?

I had an ELISA test done almost 10 years ago, which confirmed to me what I had figured out on my own - that I was "allergic" to wheat, dairy and soy. Also showed positive for eggs, which suprised me. Anyway, I eliminated all those foods at that time. Over the course of the last couple of years I figured out that all gluten-containing grains actually bothered me, but I figured since I didn't have Celiac, I didn't have to worry about all the "hidden" glutens. I really didn't know anything about celiac disease before discovering this website and sat here shocked by reading other people's stories that could have been mine. (Lots of cavities as a child, thyroid problems, diagnosed with IBS, etc.) I decided to try being "fanatical" about it right before Thanksgiving and see how I felt. I do feel better, but I'm wondering how careful I have to be if I don't have the Celiac gene. Obviously, if I do have the gene I will continue to be fanatical and watch my children more carefully. They were just all tested last week and all showed negative on the Celiac panel. I'm just trying to plan ahead, and figure out a "what if" plan.

Liz

[Lisa]

Liz:

There are so many people of this site that a far more technical than I. But I will try to answer your question from my personal experience. Remember always that everyone reacts differently to being glutened. Some of us have a lesser reaction to gluten than others, those who may have a severe reation which can wipe them out for days and sometimes weeks with migraines, D, fatigue and severe cramping and pain. What you need to be aware of is, that even though your reation to gluten may not be severe, it is still doing damage to your small intestines. That damage can lead to very terrible things, some perhaps being fatal if not address currently.

Gluten Free is Gluten Free as said 100%. I feel that you have been partially gluten-free for ten years. Being wheat free is not being gluten free as well you know. Your blood work-up may show a negative as you have been gluten free for 5 weeks. But that does not insure that you do not have Celiac Disease. You may, have a wheat allergy.

I do not know about the gene testing as I have not had this, but if you need to know for sure. I would recommend a biopsy which will determine a definate diognosis for Celiac.

Or you could totally go gluten free and make the judgement for yourself by determining how you feel.

I hope that this will help you a little. I am sure that those more familiar with your tests of interest will post and help you with your decision. Good luck.

Lisa B.

[kenyan]

Hi.

I am finding all this information extremely helpful. Here is my story so far....

I have been "struggling" with an illness (??) for as long as I can remember. I am now 35, married with beautiful 2 year old twins. For more than 20 years I have seeing various Doctor with the following symptoms:

Cronic tiredness

Night terrors

loose bowel movements after most meals (although I have only just tomld my current Doctor this due to be not thinking it was relevant (IDIOT!!)

It is also interesting to note that I matured later than most of my peers (I was about 18 when I had my main growing spurt).

I have owned and operated my own business for the past 6 years and more often than not I have been struggling with motivation, tiredness, lack of energy, concentration, anxiety. I often, due to the tiredness feel like I am wasting away my life. This has an enormous effect on me both from a business point of view and a personal satisfaction point of view. My confidence is at an all time low.

Some of the attempted solutions offered by Doctors have been:

ADHD and prescribed ritilin10

Depression and prescribed Zoloft

Haemochromotosis (did not have the gene!)

Neither of these had any positive effect on me at all. Two days ago, my wife heard an interview on the radio about the effects and symptoms of Celiac desease and suggested that I do some research. EVERY THING I have read makes perfect sense to me.

My Doctor, who I have been seeing for over 2 years order me a blood test today, which I did. I am expecting to have these results early next week.

I would like to know if any of my symptoms ring true with any one else?

In a bizarre sort of way I am hoping that the blood test and biopsy are both positive so I can get on with actually working out a way to feel better. If this happens, what can expect to occur and in what time frame?

Any other stories/ experiences would be happily read.

thanks

Kenyan/ Melbourne Australia

[kenyan]

I finally got in today for testing. After waiting for weeks just to get in, and worrying that I would be labeled a hypochondriac, my doctor was wonderful. She is up to date on Celiac and was surprised that I hadn't been tested for it before. I've only seen her a few times before and she was aware that I have troubles with wheat, but we had never gone more in depth than that. We both did some research before my appointment and she wanted me to have the Celiac panel done, even though I've been wheat free for almost 10 years and firmly gluten-free for about 5 weeks. I'm expecting that to be negative. She also agreed that the genetic test from Kimball Genetics would be a good test, since my insurance will pay for at least part of it and it will help me figure out if this is something I can pass on to my kids. (I do know that there are other genes that this test won't identify that can be passed on too.) I'm ready for the possibility that I don't have celiac disease, but rather some other type of gluten intolerance - all I know is I can't eat gluten.

But I do have a question for all of you with much more knowledge and experience. (I know that this has been touched on in other posts.) If I test negative for everything and don't have either of the celiac genes, is it as important to completely eliminate EVERY little speck of gluten? Seriously, there is a huge difference between being gluten free and watching every morsal of food that might have even touched something with gluten in it. I know that many of you have to be that careful or you have horrible symptoms, but I don't think I have such severe reactions. I haven't knowingly ingested even a crumb for the past 5 weeks, so I might react more strongly if/when I do. In the past, I only noticed reactions to significant amounts - like eating a whole spelt pancake or cookie. Do any of you who are gluten intolerant, but not Celiac react less violently that people with true celiac disease?

Liz