Help Needed...

[Isis]

Hi:

At 18 y/old I had a very bad episode of intestinal problems and then it disappeared. I tried going gluten-free for a while and felt much better but since I didn't have a celiac disease diagnose I went back to eating everything that I liked.

Fast forward 10 years and I am now 28 y/old and a few months ago I decided I am going to do an Ironman (Triathlete 2.4 mile swim, 112 mile bike ride and 26.2 mile run in a maximum time of 12 hours) in March 2011. So I decided to look for a sports doctor to get me tested for everything she needed so we could make sure I was healthy for my IM race. Turns out she is a sports doctor but also specializes in family medicine. So we started doing a lot of tests, the first that came with an unexpected result was sugar in blood levels and it basically said that for some reason my body didn't recognize when I ate sugar and started producing too much insulin to compensate. Ok, nothing a well balanced nutrition couldn't help or so we thought. Second test comes (functional Intracellular analysis, it measures what actually gets into the cells and you can compare what is in your blood and what you are actually absorbing). It shows that unlike the regular blood tests said, My B-12, Folate, Calcium and all the B vitamins were very low. Again, she said ok we'll handle this and balance everything out. Until the bone density scan came back saying that I have Osteopenia just .01 away of osteoporosis. Yes, at 28 years old. NOT NORMAL at ALL. And it also said it was due to nutritional deficiencies.

Now I got her all my past medical history and she is convinced I have a malabsorption syndrome, possibly celiac disease. We decided to do a gluten-free diet (we didn't know about the fact that a gluten-free diet is not what you need to get tested!) . I started feeling better. I stopped being hungry all the time, I stopped having stomach issues, I started losing weight and I started having some energy...finally I could start training!!!

First she did a blood test ( I can't remember the name but it basically determines if there's a detectable reaction ( I had been gluten-free for more than a month). It came back normal. Then she decided to send me to a GE to have an endoscopy/biopsy. It was the holidays and the dr was on vacation, so by the time I finally got the procedure done I had already been gluten-free for almost three months and was feeling great. Biopsy came negative.

They still decided to keep me on a gluten-free diet until another blood test looking for antibodies came back and if it comes back negative they will start me on a little gluten and see how it goes. Not cool. Two days ago I went to an oriental restaurant with my sports doctor (who has become a very dear friend) and we decided to sit at the Tepanyaki table to be able to actually see what they were putting in my food. I ordered some rice and chicken and beef with veggies... they put soy sauce in everything. After I ate that I felt very bad. Cramps, very bloated, pain, and I felt very very tired and almost dizzy. Haven't felt like that in a long long time. It took two days for me to start feeling better. Right now I am looking at some other details and options as I am not interested in going for a Gluten challenge ( I am very worried about my nutrients being absorbed, I really need them. Specially I don't need my body to feel deprived and try to get whatever it needs and might remain in my poor bones!!!!!!!!)...

Taking a look at my family history my mom and brother were diagnosed with Thyroid disease this year, my dad was diagnosed with diabetes a year ago, my mom has a very old diagnosis of Irritable Bowel Syndrome (Misdiagnosed celiac I think). My sister has been having symptoms of multiple sclerosis and severe nutritional deficiencies. I have the feeling it can be Gluten ataxia, which mimics MS symptoms to such an extent that there is no way of telling if it is Gluten ataxia or MS. I took her to my dr and her blood tests came back with the same nutritional deficiencies I have but more severe. This week her bone density scan will arrive and I am guessing she will have osteoporosis. She was also ordered to go have an endoscopy with biopsy, suspecting celiac disease. The good part is she IS eating gluten right now. If her tests come back positive I guess that will help my doctor see if I might really have celiac disease even when everything comes back negative ? She cannot explain my almost osteoporosis! Anyway I am planning on getting gene testing to see how it goes, because if it comes back negative, then something else is VERY wrong and we need to know what it is and if it comes back positive I will just keep my gluten-free diet and repeat my nutritional and bone density tests. If they show improvement, I will definitely assume it is celiac and NOT go for a guten challenge.

Any advice?

[tarnalberry]

The gene test is NOT conclusive. But you have done (at least) two dietary tests that are strongly indicative of celiac. If nothing else, why would you continue eating gluten when you know it doesn't agree with you. (You may well want to pursue further testing, but it's hard to predict what will happen.) Those blood tests and biopsies you had were WORTHLESS. I encourage you to pretend the tests never happened.

[Isis]

  On 2/6/2010 at 8:17 PM, tarnalberry said:

The gene test is NOT conclusive. But you have done (at least) two dietary tests that are strongly indicative of celiac. If nothing else, why would you continue eating gluten when you know it doesn't agree with you. (You may well want to pursue further testing, but it's hard to predict what will happen.) Those blood tests and biopsies you had were WORTHLESS. I encourage you to pretend the tests never happened.

[Isis]

Thanks for taking your time to answer . I really wanted to be sure because a few reasons:

1. I am really scared of what is going on with my bones. If it is not celiac, what is happening in my body that is destroying my bones?

2. I feel great while not eating gluten so I have no intentions of eating it again. EVER. (obviously as ou know accidents happen and even things you think do not contain it might contain it or be cross contaminated). I am not eating out much bcause I fear what happened @ the chinese rest will happen again.

3. I am really worried about my family developing celiac related diseases. i am trying to get them tested, too.

But anyway, I will just keep my gluten-free diet and see what happens with my sister's tests...she is still eating gluten and I told her not to stop before she gets tested this week. Once again, Thanks