I was diagnosed just over a week ago. (I had an clear endoscopy in April - they thought I had a motility disorder; tested positive for 2 of 3 antibodies in June)
I have been gluten-free for just over a month... but recently discovered my lip balm and multivitamin contained wheat... so truly gluten-free for a week.

Currently I am battling a mix of constipation and D.
Abdomen pain, bloating, distention (each day I fluctuate 1-2 pant sizes)
Burping with regurgitation.
Rectal bleeding.
I just broke out in hives 2 days ago.


I have been taking probiotics for a month and a half, stopped taking the prescribed antacids 2 weeks ago.

I am trying to compile a list of questions/concerns and would love any advice/suggestions.

I am worried about...
1. Food allergies, other than gluten
2. Family history of diabetes & colon cancer and the co-morbidity with celiac
3. Do I really "need" another endoscopy & biopsy? Are positive antibody tests an indicator for anything else?

First off take a deep breath and just try to relax. This is all new for you and there are more questions than answers. Have you noticed any difference since starting the diet? The fact that a couple of products you used had gluten need to be eliminated before suspecting anything beyond Celiac. The most effective thing you can do at this point to make "every" effort to be 100% gluten free and see how you react. The results of that will dictate what your next options and questions will be. Unless the doctor you are seeing is knowledgeable about the gluten-free diet I don't know what you could ask him (or her). I think any question you may have related to Celiac or the diet can be answered on this board. My final suggestion is to keep your diet as simple (naturally gluten free food ) as possible and let nature takes it's course. The wonderful thing about this board is that it is open 24/7 worldwide and someone is always available to listen. Hope this helps.

tom

Thanks Tom, I am totally flustered by all of this. (which I guess is even visible through the internet

I share a living space with two "gluten eaters," and while they have been great and supportive I guess I cannot rule out the possibility of cross-contamination completely. Some of it is my fault... I didn't even think about how sharing the toaster oven was mistake until yesterday.

Yes, my body has made some improvements - I am puking less and my fatigue is changing, but I think a lot of that has to do with acupuncture and drinking 64+oz of water a day.

I am not going to lie, I know there is a twinge of denial here.
I am a food writer and one day a week I work in a bakery... so this is a really difficult kick to the gut. (my punny is still alive and well)

My primary care is refusing to speak/see me, saying I must go to the GI specialist... who has referred me to a celiac specialist, who won't return my calls.
My appointment is with the GI specialist tomorrow.

I know I am lucky for only being mis-diagnosed for 3 months, compared to many who have shared their stories... I just really want to get healthy, like yesterday.

Patience is difficult when you feel so awful... I can empathize because it took me awhile to realize all the ways I could be get "second hand gluten". I cook for two young children who are not celiac, so I have had to become pretty creative to avoid it. I have an entire section of the counter that is strictly gluten free. I do not use wheat flour for anything - any baking or cooking I do is gluten free. But I do make them sandwiches or waffles - I either wear gloves or wash my hands thoroughly afterward. My children have learned to be diligent, as well (they have seen me sick too often).

If the gluten eaters you live with are not your children, then you will have to wipe down the counter each time you use it (with wipes or paper towels, as sponges can hold onto gluten), wash your hands frequently, use separate pots, pans, etc. I use paper or plastic plates, utensils to avoid contamination. Wooden spoons, collanders which have been used for wheat pasta are a no-no - you'll need separate ones for yourself.

It's a pain in the butt but it's do-able and worth it to not feel sick. It will take awhile but you will feel better and better.

Hang in there -

Sheryll

Sheryll, thanks so much.

I have gotten new kitchen pots/pans/utensils/cutting board/toaster and one of my house mates even had the great idea of getting a big tupperware bin to store them all in.

Once I found the courage to talk to them about all of this (they are both adults) I was amazed at how helpful they have been. They do forget to wipe down all the crumbs from the counters some time, but have been very respectful of my gluten-free bin of tools, cabinet and clearly marked items in the fridge. (Yesterday, one was making banana bread and even remember to give me a heads up before busting out the wheat flour.)

I think it has just taken me a while to get into a new routine... wiping down everything, laying down paper towels before the cutting board and keeping everything separate. It is getting easier and once the docs figure out why I am still in pain I am sure it will be even better.

Thank you for the support. This message board has seriously saved me time, glutenings and a good chunk of my sanity.