the other shoe just dropped...celiac disease

Michele,
Congratulations on finally getting the diagnosis...this is a good thing, not a bad one.
Thankfully there are a lot of cook books and sites out there to guide you through this...I do not have celiac but react negatively to wheat (craving/bloating/swelling...)so am better off without it...I use a lot of 'other carbs' to cover me when I manage to unhook from it...potatoes are great, some other grains and thickeners etc...most root veggies are good if I remember well...'gratins' meaning oven dishes with layers of root veggies with creamy sauces are very satisfying and cover the 'pasta' cravings...there are now bakeries and restaurants that cater to celiacs'....the first step is getting the diagnosis, the second is to phase out the wheat and other allergenes then learning where to search for the in the ingredient list of commercial products (most puddings, ice creams and some yoghurts etc use wheat based thickeners for texture)...you may need to go to an all natural diet for a while before you master this but once you have got the nack for it you will be fine...
Hugs
Sharon

Thank you Sharon. I have 2 cousins that both have Celiac's, on opposite sides of the family! That's what led me to ask for the panel to be done. I know that eventually I will master this new challenge, as I have mastered my pouch. I am hoping that the more natural diet will help me lose a few pounds I'm just overwhelmed at this point. Off to do more reading! Thank you!

You should do fine. Lots of carbs don't have gluten, like rice and corn.

The main challenge is that most breads and prepared foods contain gluten. But, more and more stores are providing gluten free products, and many restaurants also provide gluten free menu items. Plus, if you just ask the waiter to tell the chef to prepare gluten free, most recipes are adaptible (of course, things, like mac'n cheese, that are prepared ahead cannot be adapted).

I think what you will miss most is wheat bread, cereals, and pastas. But, you will learn to love the alternatives, because you will feel so well. There are many websites out there for celiac support.

Jan

We grow beets and they taste great roasted, or boiled. They are deep red but are root vegetables I'd forgotten about.

Michele, I'm sorry to hear this. It must be frustrating to have further limitations. On that note, I'm sure you will adjust and hopefully start feeling fantastic.

Can I ask you a quick question about your iron levels? Did they fluctuate or did you just remain very low? I have become severely anemic and my labs are pointing mostly towards absorption issues. My celiac blood test was negative but park of me is thinking I may have a gluten intolerance nonetheless.

Wishing you with best of luck with this.

I don't think it hurts to go on a gluten free diet does it?

vstRN, I have had issues with my iron stores dropping ever since my surgery back in 1986. I had 4 iron infusions over the years which always helped tremendously. However, I went in for one last fall and had a massive anaphylactic reaction to the test bolus. Yes, it was the same exact type I had gotten the previous 4 times. My primary MD sent me to a hematologist, who found the B12 deficiency and thought it would be a good idea to test for Celiac's due to other assorted symptoms. So, now, after all these years without a GI MD, I find myself looking for one again! Good luck to you, I hope you find answers. Perhaps try going Gluten Free and see how your body responds?

I finally had an endoscopy and received my phone call last Friday afternoon, that yes, the biopsy was positive for Celiac Disease. The damage is severe, and no dysplasia. It is interesting going gluten free. I am on my 6th day of being gluten free, I feel pretty good. The hardest part is figuring out what to eat and spending alot of time planning and cooking. My pouch is in shock All these veggies and fruits are delicious, but rough on the system. I decided to do whole, natural foods for as long as I can to let my gut heal. Long road ahead and I know I have bumps coming up, but so far...pretty decent. A little easier than I expected.

There are so many gluten free choices these days, and so much awareness. Perhaps the best time to get the diagnosis in the hx of the disease! Good luck. I had them test me recently, but it was negative, though I've been lactose intolerant since childhood.

Michele,

Look into amaranth, quinoa, teff, and buckwheat. All function like grains, but are not grains. You can also eat green wheat. There are a lot of great meals you can make with these non-grains that are filling and should be pouch friendly.

Sue

Quinoa was TERRIBLE for my pouch. Oh my goodness. It just all clumped up in there, did NOT digest, and I had a devil of a time getting it out.

I would eat quinoa very cautiously if you're prone to blockages... was very hard on me, and completely came out undigested. If you eat it, don't eat tons at first, and drink LOADS of water. That's if you eat it in its regular form.

You can get flour and stuff made from it, which would likely be fine.

I have been gluten free for about 4 years but do not have celiacs. I do have chronic pouchitis though so my husband and I went gluten free. It does help and there are TONS of products out now but if you check out the internet for literally any recipe with a gluten free version it will be there. That is how I do it. But also most GF people will tell you it is pretty easy to just eat things that naturally don't have gluten instead of shelling out the money for gluten free alternatives. One major one for me is potatoes. You can now eat french fries with every meal! Just joking but it becomes pretty easy after you get use to it. It has improved my health overall, not just my pouch. I also think it forces you to be more concious about wha you eat, (as if we weren't already). Best of luck in your recovery, I am sure you will be doing much better soon!

Michele,
Hope your doing better on the gluten free diet.

Thinking of you.

Look up Paleo diet. I have to be runny with my pouch so food is always a challenge with me. I mainly follow a candida diet. I know some don't believe in it but I was told I have an over growth and it is just as strict, if not more than gluten free.

I got a Paleo Bread book of Amazon recently and the recipes are awesome. I find if I eat processed food it is almost as bad as eating sugar and gluten even if they don't have either in the ingredient list.

But the bread book is awesome. I also got a Almond Meal book that is pretty kick butt! Here are some links to the books. Hope they help you not feel trapped and give you options.

http://www.amazon.com/Paleo-Br...keywords=paleo+bread

http://www.amazon.com/Gluten-F...almond+meal+cookbook

I personally stay away from recipes with coconut flour since it just blocks me up but if you have a jpouch you might have better outcome

quote:

Quinoa was TERRIBLE for my pouch

It almost put me in the ER. I couldn't go to the bathroom for almost 2 days.

Quinoa is just fine for me (and it's a great Scrabble word!). We're all different.

Hi everyone! I just wanted to let you know how things are going being gluten free. I have now been officially gluten free for almost three weeks and feel great! I'm absolutely amazed at the differences I have experienced. I have no more chest pains, no more nightly hot flashes. My bowels also are doing much better. (Almost too good) I have lost 6lbs. I have been eating mostly natural, fruits, veggies, protein in the form of meats and dairy products. I have had some people tell me that I should give up dairy, but it doesn't seem to bother me as it did when I was a kid with lactose intolerance. I have discovered Vans gluten free waffles for breakfast and Udi's gluten free bread for an occasional sandwich or toast. The hardest part, is not being able to just make a quick stop for a bite to eat if I'm out running errands. It takes planning and alot of research to find restaurants that do cook gluten free appropriately. I always have snacks in the car, almonds, a piece of fruit or a protein bar in case I get hungry. Drinking tons of water and keeping immodium close by. My gut at first was telling me I was crazy for eating all the fruits and veggies, but things have slowed down (thanks Jan). I use brown rice as a binder if I need one, yummy, healthy and filling. Thank you all for your support. If you are having terrible gas, bloating, fluctuation from diarrhea to constipation, iron deficient and/or B12 deficient, talk to your MD about having the Celiac panel drawn. Celiac is an auto-immune disease, which from what I have read and been told, those of us with UC or Crohns, are predisposed to. Those damn auto-immune diseases never stop showing their ugly heads... Definately on my way to much better health!

PlantFusion is an awesome gluten, lactose, soy, and all free protein powder mix that is great to make smoothies with. It has become my favorite meal of the day. There are different flavors, Vanilla, Chocolate, and I forget the rest. If you want to try it go to their website and enter your zip code to find out where it's sold by you. You can also order from Amazon etc. I use fruit but also dump in fresh spinach, carrots etc. My nutritionist is the one that introduced it to me as I had a real hard time getting fruits and veggies in my diet. It furnishes 43% of daily required protein and has all kinds of good nutrients.

I am happy for you and so glad you are feeling better!

Hello,

The same thing happened to me today. After 12 years with a pouch, doing very well, today I received a blood test result saying that I tested positive for the celiac antibody (Endomysial IgA Ab). From what I've read today it's pretty much 100% I have celiac. I am feeling really shocked and upset.

Last week I went to my old GI doc because I was feeling a lot of joint pain (like I did when I had colitis) and fatigue. I was totally convinced it was pouchitis and dehydration and hoped to be fixed up with Cipro. . this cycle has happened several times over the last 12 years.

The doctor read through my entire history and must have suspected something, because he had me schedule a pouchoscopy AND endoscopy, as well as he ran the blood panel including celiac screen among other things. I am shocked to learn I tested positive for the antibody as well as had elevated levels (Endomysial IgA AB Titer value of 80, should be <5).

I go in for the endo/pouchoscopy on Thursday. I have felt so lucky the last 12 years to be living so healthy with the pouch, I even had 2 healthy children with a pouch, and I'm just feeling really sad that I will be dealing with this new autoimmune disease for the rest of my life. I guess it's one of the better ones to get since it can be managed, but still.

Michele if you see this, or anyone else who may have a pouch & celiac disease, I'd love to hear how you're doing.

Thanks

Kat122,

I'm sorry you will need to deal with this. I know a young lady that was diagnosed with celiacs shorty after type I diabetes. She went on to graduate with honors from college while playing on a golf scholarship. She called places like Taco John's to find out if they had any Gluten Free foods ahead of her traveling to different college golf competitions. I never did find out what she did about those dates. She continued on and became a Chiropractor and we're going to her wedding to another Chiropractor Saturday! No doubt she'll have children too. I'm telling you this as you sound like an awesome person. Having kids with a j-pouch, I have no doubts you can handle this too.

I just received results from my blood tests and I don't have celiacs. Sorry to say this but I almost wish I had it as I have your symptoms and have had them for years. I have fibromyalgia. I ate gluten free in the past for months but I didn't feel better. My doctor included the blood testing this year as I'd never been officially tested.

The problem we've had with illnesses is we've never had good choices to choose from. (It was either an external bag or a j-pouch right?) I'm sorry you don't have a choice again.