Recent Dx, Better But Still Troubles

[michellehunt]

Hello everyone-

I have been gluten free for about 6 months. I have had a few slip ups, one resulting in me passing out cold and getting a nice bump on the head and a trip to the ER.

I have been getting sick again recently with the loose stools and gas pains. I am thinking maybe I have other food allergys.

I haven't had the biospy, just blood work confirming the celiac disease. I was already off wheat at the time and only ate gluten one day before the test and I am a bit surprised it came back positive from what I have read.

My blood work in the beginning of this journey showed me as having lupus and RA. I also have a positive ssa and ssb, so the Dr. always asssumes all my problems are the lupus. From what I have read I may not really have lupus as the celiac disease and food allergys may cause this result.

I have had no "allergy" testing and have not seen a nutritionist.

I just don't feel like spending another 10 years and thousands of dollars I can't afford to only get part of the answers.

I lost over 90 lbs. before my DX and have managed to gain 15 back this year. I feel weak alot and lightheaded sometimes, I try hard to get in the habit of taking vitimans and don't know what else to do.

Any advise would be appreciated.

Thanks

Michelle

[pamelaD]

Hi Michelle,

The best advice I can give you is to eat very simply. Stay away from processd foods and anything else you suspect might be giving you troubles (soy, corn, dairy, etc...).

When I was first trying to get back on my feet I ate a lot of rice (and cream-of-rice) and bananas (drizzled with honey for a few extra calories), poached chicken (drizzled with a little flax oil for omega-3s), poached or fired eggs, potatos, etc... I jokingly referred to this as my 'white food' diet! But nothing else sounded palatable to me at the time.

Not a lot of vitamins, but it's important to get the calories and be gentle to your gut at first.

Then after I started feeling better, I started adding in veggies (well cooked), dairy, and fish (salmon is esp good for you).

There is so much talk of gluten-free bread, donuts, cereal, etc... but most of it is really junk food just like all the non-gluten-free processed stuff!

I also take a Centrum chewable vitamin with lunch every day.

Good Luck and feel better!

Pam

[Canadian Karen]

Hi Michelle,

Sorry to hear that you still haven't gotten your health back (I know how you feel!!!!)

When you said that you were only eating gluten again for one day and the test still came up positive, the first thing that I thought of was that you were somehow still getting glutened all along by something hidden and that's why you still tested positive after being gluten-free for 6 months.....

Have you checked everything? Not only food, but vitamins, minerals, supplements, medications, shampoo, toothpaste, lotons, soaps, etc.? All can possibly contain gluten. Have you gotten your own utensils, toaster? Silly me, before I joined this forum, didn't even realize that using the same toaster as everyone else was contaminating my gluten-free bread BIG TIME!!! Also, over the counter medication are tricky too. I thought for sure I was totally gluten free until I found out that the Gas-X Chewable Tablets I was taking for the gas (and I was eating those things like candy!!!!), actually contained gluten! (the softgels are okay for us....). It usually takes a really long time and lots of reading to really weed out all of the gluten. Do you lick envelopes at the ATM? Do you know that the glue sometimes contains gluten? Same with stamps....

Do a complete mental checklist of everything that even comes remotely close to your mouth. That's the best way to make sure there isn't anything hidden anywhere......

Hope you are feeling better soon!

Karen

[Guest nini]

I agree that you have to eat simply for the time being and double, no triple check EVERYTHING that comes near your mouth to make sure it's gluten free, YES this includes kissing somone on the mouth that has been drinking beer or eating gluten foods and hasn't brushed their teeth.

Stick with foods that are mild and naturally gluten free. Potatoes, Rice, baked chicken, baked fish (NO IMITATION FISH), applesauce, bananas... stick to that for a while till you start to feel better, take a good multi vitamin, check to make sure they are gluten-free. Stay away from sodas and limit coffee intake for a while. Limit dairy foods, you may need to eliminate dairy while your system heals, stay away from spicy or acidic foods for now, also, avoid high fiber foods for a while until you feel better and then introduce fiber GRADUALLY.

good luck and keep us posted

[Carriefaith]

Casein (the milk protein) intolerance is common amoung those with celiac disease. If you think that you may have another food intolerance I would try elminating casein for a few weeks and see how you feel. I am gluten and dairy free and don't mind the diet at all. Some other common food allergies are soy, corn, egg, and nuts. Also, maybe try eating more fresh foods instead of processed foods. I've been eating a lot more fruits, vegetables, and meats and I find that I am eating less and staying full for longer time periods. If you need any meals ideas or recipes, just ask!