What To Do?

jojoe72 · June 13, 2006

I need a little advice from you guys. Here's the deal. Up until last year I never knew anything about Celiac but as I look back on my life I see that I have and had all the symptoms. Anyway, I was horribly sick last year with severe malabsorbtion (food was passing right through me undigested) and other gut problems. Someone mentioned to me it sounded like Celiac and should try a gluten-free diet. After starting the diet I started feeling better. Just to verify, I did Enterolabs testing and came back positive for the gene and elevated antibodies. I thought that these 2 tests were enough but after 5 months of a strict gluten-free diet I was feeling better but not 100%. I went to see my doc and he did the celiac blood test panel and it came back negative. He then referred me to a Gastro to get a upper gi. He was about to do the test (I already had the IV in my arm and was about to be sedated) and then realized I had been gluten-free for the previous 6 months. He wants me to go back on gluten for 6 - 8 weeks and come back. Well, Im on week 3 and I feel like death. Im having alternating constipation with severe D and have been doubled over with severe cramps everytime. I can't even think straight anymore. I read some posts here about brainfog and that's exactly how I feel right now. I don't know if I can go on 4 more weeks. I guess my question would be should I go on? Was the original 5 months I was gluten-free not enough time to totally get over this? If I do keep eating gluten for the next month will I do permanent damage? Also, is 6-8 weeks enough time to show damage through a biopsy? I guess the pain I'm going through right now would be worth it to get a positive diagnosis. Thanks for any input.

Joe

Smunkeemom · June 13, 2006

depending on how bad you were damaged 5 months really isn't enough time to feel 100% most people (adults) can take up to a year to feel a lot better. Did you improve at all? even a little bit?

if you have celiac, eating any gluten will damage your intestines, no matter how little or for how short of a time, however you must be on gluten for a while to do enough damage for them to pick it up in endoscopy, and it takes about 3 months with a lot of gluten everyday. When they biopsy they take a little bitty peice it's very common to get a false neg. on that because they miss the damage. 8 weeks really isn't enough time to affect the outcome of your endo. in my own experience, but it will make you pretty sick if you do have problems with gluten, maybe you can call your doctor and tell them you are pretty sick and ask them to just put on your chart gluten intolerance and let you go gluten free again.

ravenwoodglass · June 13, 2006

jojoe72 said:
. He wants me to go back on gluten for 6 - 8 weeks and come back. Well, Im on week 3 and I feel like death. Im having alternating constipation with severe D and have been doubled over with severe cramps everytime. I can't even think straight anymore. I read some posts here about brainfog and that's exactly how I feel right now. I don't know if I can go on 4 more weeks. I guess my question would be should I go on? Joe

I would contact your doctors office immediately and let him know what is going on. Ask for the doctor to call you back and do not downplay your symptoms. Be as grapic as you can. You can also ask for an emergency appointment on a day you have severe D. Your freqent trips to the B-room and the look of death on your face should be enough to convince them. You have done a gluten challenge and you have obviously reacted. There is now no doubt as to your gluten statis and to continue to poison yourself should not be neccessary. IMHO

AndreaB · June 13, 2006

I have to agree. If you don't need an official diagnosis, then go with gluten intolerance and get back off the gluten. It may be beneficial to see about other intolerances particularily soy and dairy. Soy can do as much damage as gluten to the intestines. It may take time to figure things out and for your body to heal. If you can afford it get the enterolab test for an idea of malabsorption, ttg and intolerance to gluten, dairy, soy, egg, yeast then do that. It costs over $500-$600 for all of them.

June 13, 2006

5 months is not enough time for a complete recovery. If you were feeling better and now feel like crap on gluten then you have your answer. You are gluten intolerant which eventually leads to villous atrophy which is Celiac, which heals when you are on a gluten-free diet... SO, you have been dx'ed by dietary challenge. Call the Dr. immediately and tell them you will not stay on gluten for one more minute for a stinkin test that very well could miss damage if it's in the early stages of the disease. Tell them that you insist that your dx be Gluten Intolerance and don't look back. It took me a good TWO years before I really started to feel better and I am going on 3 1/2 years gluten-free now and I am still not completely well because I keep getting accidentally contaminated... (my husband eats gluten and isn't the most careful with his crumbs) You can't expect to be completely well in just five months. Lucky you if you are, but you've been getting damage for a lot longer than five months and while the body is amazing in it's ability to heal, you need to be patient. And make triple sure everything you eat is gluten-free, and all of your personal care products, and vitamins and medications.

Girl Ninja · June 13, 2006

Does taking a gluten challenge qualify for any sort of medical leave from work? I'm self-diagnosed and if I ever had to have the tests I know it wouldn't be wise for me to commute an hour both ways or possible for me to do my job. Just hearing the length of time you have to be back on gluten freaks me out.

jojoe72 · June 17, 2006

Thanks for the replys. Sorry I didn't write back sooner but I'm not feeling too hot right now. Im so damn drained and irratible right now. Stomach isn't too bad right now but the rest of me feels not so good. I'm going to try to finish this out for the next 3 weeks. Again, thanks for the input.

Joe