Positive Tests, Negative Biopsy, Useless Doctors

[gmb]

I have no idea what to do but I am not getting any help on this from my doctor. I will try to keep this condense yet explain the factors involved.

1. My daughter has diabetes and celiac desire which was confirmed with biopsy May of 06'.

2. I started feeling very poor in february, but it was more feeling tired and lethargic. Massive stress also seemed to coincide with that period.

3. Doctor ran normal blood tests and I forgot to ask for the celiac test which I knew I needed to do. blood test were fine

4. started feeling bloated and stomach cramps. first time in a long long time I had either. I NEVER have any problems with my stomach or gi system.

5. ask doctor for celiac test, the test came back positive or as it was hand written "suggestive" of celiacs but it was like two positive test items and three negative items.

6. consulted my gi doctor and she said given my daughter and the tests its highly likely I have the condition.

7. doctor takes 10 biopsies, all NEGATIVE. Doctor says she was shocked given my daughter.

8. redo all the blood tests, basically same conclusion, the DQ2 I believe was positive and the DQ8 negative. The report also stated that 39% of all people will test postive for one but not the other.

9. at my strong suggestion my dad gets tested and his results mirror mine

10. so far only the doctors nurse has called me back and said it was mixed blood work, I ask what do I do moving forward and her suggestions, and I am not kidding "maybe you should not eat so much wheat"....after calming down I told her to have the doctor call me so I can figure out how to live the rest of my life. Have not heard back.

Are these strange results, is this just part of the condition. My stomach never really was in that much pain if I had to rate it between a 1 and 10 I would say a 3 for a breif period. Had a bunch of wheat today after going gluten-free for a few weeks (pretty easy to do when your daughter has it) and no pain, nada, feel great. can you be a carrier but not actually have the condition?

I really dont know what to do

[tabdegner]

I had negative blood tests and biopsy 2 years ago (see my signature below) but still believe I have celiac. I believe the biopsy was taken in the very early stages of the disease and didn't show damage yet.

Did you feel better on gluten free?

After being gluten-free a few months, I decided to eat gluten again to see what happened. It wasn't an immediate effect, but within about 24 hours I was VERY VERY ill. So it might take longer after to have eaten the wheat to get sick.

I was very frusterated w/my doctor for a long time because he wouldn't do another biopsy. But then I felt so much better on gluten-free, that it just didn't matter...

[happygirl]

Get a copy of your bloodwork. You may have a non-Celiac (by Celiac, we mean villous atrophy) gluten intolerance...which doesn't cause damage, but, can cause many of the symptoms. Or you may not have enough damage yet to be picked up on the biopsy.

I'd try the diet. What can it hurt?

[aikiducky]

It takes time for the damage in your intestine to develop. It's possible that you were scoped before that had happened. It's also possible that you carry the gene but don't have active celiac, and that your symptoms were something else.

You have two choices: go gluten free without an official diagnosis, or continue to eat gluten but get tested periodically because you might test positive later when more damage has developed.

What I wouldn't do is go gluten light. That might mean that you don't have noticeable symptoms anymore but do damage on the inside that will creep on you later. I'd say go 100% gluten free or keep eating enough so that you can be retested later.

Pauliina

[gmb]

I had negative blood tests and biopsy 2 years ago (see my signature below) but still believe I have celiac. I believe the biopsy was taken in the very early stages of the disease and didn't show damage yet.

Did you feel better on gluten free?

After being gluten-free a few months, I decided to eat gluten again to see what happened. It wasn't an immediate effect, but within about 24 hours I was VERY VERY ill. So it might take longer after to have eaten the wheat to get sick.

I was very frusterated w/my doctor for a long time because he wouldn't do another biopsy. But then I felt so much better on gluten-free, that it just didn't matter...

thanks for the response, very interesting. I hopey you dont mind but how old are you, I am 33. My daughter was diagonosed with Type 1 in 03' when she was 3. I dont know what came first, the diabetes or the celiac as they did not test for it when she was diagnosed.

I have never felt really ill, I just started feeling bloated. Before my biopsy my goal was to eat as much gluten as possible and never felt that bad.

I dont mind living gluten free as we already have all the food I just would like to know whats going on one way or another.

[gmb]

It takes time for the damage in your intestine to develop. It's possible that you were scoped before that had happened. It's also possible that you carry the gene but don't have active celiac, and that your symptoms were something else.

You have two choices: go gluten free without an official diagnosis, or continue to eat gluten but get tested periodically because you might test positive later when more damage has developed.

What I wouldn't do is go gluten light. That might mean that you don't have noticeable symptoms anymore but do damage on the inside that will creep on you later. I'd say go 100% gluten free or keep eating enough so that you can be retested later.

Pauliina

this is what I want to find out, if you can have the gene for it but not actually have the condition. as I stated my dads test were basically the same as mine but he has had stomach problems for year and years. He is 61, I dont think he is going to change anything at this point in his life.

[gfpaperdoll]

If youreally need a diagnosis you could test at Enterolab.com

Have you read any of the books on gluten intolerance/celiac ?? I cannot imagine anyone that has read all these books & has a celiac child that would be wanting to eat gluten...

[mftnchn]

Yes, the gene is possible without active disease.

[confusedks]

I am all for Enterolab, but it does NOT DIAGNOSE CELIAC DISEASE!!! It tells you if you are reacting to gluten, but it does NOT diagnose Celiac Disease. I just wish I would have known this when I got tested with Enterolab.

Kassandra

[aikiducky]

Yes, just to second mftnchn, it's possible to have the gene but not have the active disease.

Pauliina

[Fiddle-Faddle]

I am all for Enterolab, but it does NOT DIAGNOSE CELIAC DISEASE!!! It tells you if you are reacting to gluten, but it does NOT diagnose Celiac Disease. I just wish I would have known this when I got tested with Enterolab.

Kassandra

For many of us who have no major issues other than gluten, it doesn't seem to matter whether the diagnosis is celiac disease or gluten intolerance, as both the symptoms and the cure are identical. Indeed, for many (if not most or even all), gluten intolerance seems to eventually cause celiac disease (as defined by villi damage) if gluten consumption continues. And with both celiac disease and gluten intolerance, continues gluten consumption also means MUCH higher odds of developing other, more devastating autoimmune disorders.

Also, some on this board have posted that they had positive biopsies for celiac--but negative bloodwork, including genetic testing.

Either way, dietary response seems to provide the clearest answers (so far, anyway).

[CMCM]

Well, if your daughter has been diagnosed with celiac disease, that means she has at least one celiac gene. And since that gene is inherited, it came either from you or or husband. Or perhaps both. It would be interesting to know what both your daughter's genes are. I'd say at the very least get yourself gene tested so you know what the possibilities are with yourself.

Now you can have the gene but perhaps it has not yet been triggered. Nevertheless, you could still be gluten sensitive and have symptoms evolve and progress from that. You can go a lifetime without celiac disease being triggered, but you can still get sick and have lots of associated problems. Ignoring gluten sensitivity is not a good thing to do because damage to your body can still occur.

My mom has celiac disease, and I knew I had a possibility of inheriting her celiac gene. I got tested and learned I did have the gene along with a gluten sensitive gene from my dad. I have 3 siblings, none of whom wanted to bother with getting tested. My mom was curious, so she got tested and learned that she has TWO celiac genes, therefore, all of her children have at least one celiac gene (you get one gene from your mother, another from your father). Thus far, I am the only one of her children who appears to have obvious gluten problems. And since my mom has 2 genes, that means my grandmother also had at least one. My grandmother lived until 99 and had no major symptoms EXCEPT she did have bad arthritis. There's a connection, and perhaps her arthritis was caused by eating gluten when she shouldn't have. So while she never had actual celiac disease, she DID have gluten sensitivity, and the arthritis was the result.

The important thing is to know all the possible things connected with gluten sensitivity. There are over 200 different things which can be a result of eating gluten. Many of the autoimmune diseases such as rheumatoid arthritis, lupus, fibromyalgia, headaches, joint pain, it goes on and on. Not all people who have these are celiac, but many many celiacs DO have these as a result of eating gluten. Read the book "Dangerous Grains" to learn about all this.

[gmb]

I appreciate everyone who has taken the time to reply. I discussed the results with the doctor today and she echoed alot of the statements here. Whether I am having symptoms or not because of my daughter being positive and my wife negative then its almost certain I have some sort of condition and thus should not eat gluten.