Wish I Had A Diagnosis!

[vegan lisa]

Hi,

I have been sick with GI issues and stomach pain for nearly a year. I was initially put on nexium for my symptoms. It didn't help, and in fact I got much worse over the first 3 months. I was referred to a GI who strongly suspected celiac based on my symptoms. My blood panel and my biopsies (she took 3) were negative. My colonoscopy was also normal. I quit taking nexium and many of my GI symptoms cleared up. However, I wasn't all better and the pain was still quite disruptive.

In addition to the GI issues, I also suffer from fatigue and joint pain. I read the descriptions here and in other articles about common celiac symptoms, and I feel like I'm reading about myself.

So, 3 weeks ago I decided to try a wheat free diet (which has been gluten free by coincidence) as well as cutting out apples and coffee (I only ever drink decaf, but I was drinking a lot of it). I felt tons better! Then last weekend I ate oatmeal (Quaker) for breakfast 2 days in a row, and had a horrible relapse, including joint pain, lower body temp, and bright orange diarrhea. Sounds like celiac, right? Now I'm back really gluten free and plan to wait a few weeks and then try to add back coffee and apples slowly.

I just wish I had a diagnosis. This diet is really difficult for me, as I'm vegan and also avoiding rice, potatoes, and nuts because of my daughter's life-threatening IgE allergies. I'm of low weight, and having trouble feeling full and maintaining my weight on this diet. (I am eating a ton of beans, quinoa, soy and corn.)

It's also hard to feel motivated by something that appears "all in my head" to my GI and my GP. After my relapse with the oats this past weekend, at least my husband is now getting on board, which does help.

Could this be an intolerance? There's no definitive test for a sensitivity, right? Is there any chance it is celiac despite my negative tests? Seems unlikely. Even my IgA was normal. Is food allergy testing worthwhile? I've only had hives a few times in my life, so it seems unlikely that's the culprit.

Thanks for listening. Any advice on future testing or anything I could ask my doctor would be welcome. I haven't been back as my GI sent me away saying "you have none of the illnesses which I treat".

Lisa

[lucia]

Lisa,

American doctors aren't very good at diagnosing celiac or gluten intolerance. According to the Celiac Center at Columbia University Medical School, it takes 9 years on average for a celiac to be diagnosed. Besides the general lack of knowledge about Celiac in the medical community, it's also not an easy diagnosis because it manifests differently in people. Adding to the confusion, it's also likely that there is a definite condition now known as "gluten intolerance" which doesn't officially qualify as celiac, but whose sufferers also react strongly to gluten.

It's very important for you to know that the only definitive test for celiac/gluten intolerance is a dietary response. The other tests are helpful, but all have a high rate of false negatives. My doctor diagnosed me as celiac/gluten intolerant on the basis of dietary response. You definitely sound like you have issues with gluten. You're doing the best thing for yourself.

Lucia

[Looking for answers]

I recommend staying on the diet if it's giving you relief. I also suggest doing a full food allergy panel. I was shocked recently when I was told I have a high allergy to egg. Now that they've gotten the boot, my overwhelming fatigue has lifted.

[jester]

I'm so sorry you're having such a hard time -- I'm a vegetarian and I told my husband if I'm diagnosed I'll be going back to meat because I don't think I can maintain two restrictive diets at once. I can't imagine how hard this must be for you. One reason I'm afraid to get the testing (but doing it anyway!) is because of the high rate of false negatives. I do think you're on the right track, though - if it works, do it, regardless of what the doctors say. It's your body! How it responds trumps what their textbooks say should be the case.

[srall]

I actually discovered I was intolerant to gluten and dairy while on a vegan diet, in which I also dropped wheat. I was feeling so awesome about not eating meat and a kinder gentler approach to our planet, but I found that as I had to drop wheat, dairy and then soy and corn from my diet, I was actually crashing more on the "veganiac" diet (vegan + gluten free) than from my previous junk food/gluten rich diet. I know people have different reasons for being vegan, but I've found it virtually impossible to stick to a vegan or vegetarian diet with all these food intolerances. I hope you can do it...I'm just putting it out there that your health is the most important thing especially while you are healing. I love vegans...so I hope I'm not offending anybody.

[Skylark]

Yes, this could absolutely be an intolerance. It's called non-celiac gluten intolerance. With your bad reaction from a challenge with wheat contaminated oats, it's pretty clear you don't tolerate wheat. It's not in your head by any means.

I think vegan diets are really hard for celiacs because the gluten-free diet is so restrictive to begin with. You will feel fuller if you eat more fats and oils. A drizzle of olive oil on salad, veggies brushed in oil and roasted, or stir fried tofu or tempeh that take up some of the oil will be more filling. Look for rich foods like olives and seeds your daughter is not allergic to. Maybe sunflower, pumpkin, sesame seeds, or pine nuts?

Vegans and celiacs are notoriously low on B12 so you're at double risk. You might consider a sublingual methylcobalaman supplement. We also tend to be low vitamin D which will make you tired.

[lucia]

I think vegan diets are really hard for celiacs because the gluten-free diet is so restrictive to begin with.

When I started the process of healing from this condition, I was a pescatarian. Certainly not that difficult compared with being a vegan. After 6 months now gluten free and now also on a SIBO diet (no grains, no sugars), I'm eating chicken again. I started with chicken broth, then started eating chicken several weeks after. It was really weird, after not eating meat for over a decade, but it was highly recommended by my acupuncturist.

I'm not a person who believes that you can't be healthy without meat (I have many healthy vegetarian inlaws in India), but animal protein does provide nutrients that are hard to get otherwise which are good for building strength. I felt better within a week of starting to drink meat broth (just 2 oz a day). I saw it initially as a temporary measure, since I was so weak. Perhaps it will be, I'm not sure at this point.

(I also tried beef broth, but was disgusted by it. I don't think I'll ever be able to eat beef, partly for cultural reasons though since I do identify as a Hindu now.)