Searching Firm Diagnoses Feel Miserable

[ksymonds84]

Hi everyone. I haven't been on for awhile because I've been doing some experimenting. I was gluten free for over a year and a half. Initially I got better but after 4 months other intolerances seemed to keep popping up. I had a negative blood test (already started gluten free diet because didn't know better) but since I was doing well gluten free (in the beginning) my family doctor diagnosed me as gluten intolerant. Over the last 6 months I've kept questioning my diagnoses wondering is it just a dairy allergy, IBS (initial diagnoses over 20 years ago) fructose intolerance etc because I wasnt getting better...so May 1st I started eating gluten again with no real problems (to get a firm diagnoses with endoscopy) but major problems when I tried dairy. Now for the last 2 weeks, I am pretty miserable with eating gluten and no dairy. It started with my period and has still not gone away. I am having loose stools, stomach cramping, fatigue, joint pains, tingling face and muscle weakness in right hand and arm. I would just go back to non gluten but I have an appointment with Dr. Lewey on August 6th. As some of you know, he is the guru GI doctor of the celiac world and I really want his opinion. I don't want to go through denial again in another year because I never had a firm diagnoses. I guess I am just venting that I feel so miserable right now. Does anyone have any suggestions to making the next 1 1/2 months more bearable?

[The Fluffy Assassin]

Hi everyone. I haven't been on for awhile because I've been doing some experimenting. I was gluten free for over a year and a half. Initially I got better but after 4 months other intolerances seemed to keep popping up. I had a negative blood test (already started gluten free diet because didn't know better) but since I was doing well gluten free (in the beginning) my family doctor diagnosed me as gluten intolerant. Over the last 6 months I've kept questioning my diagnoses wondering is it just a dairy allergy, IBS (initial diagnoses over 20 years ago) fructose intolerance etc because I wasnt getting better...so May 1st I started eating gluten again with no real problems (to get a firm diagnoses with endoscopy) but major problems when I tried dairy. Now for the last 2 weeks, I am pretty miserable with eating gluten and no dairy. It started with my period and has still not gone away. I am having loose stools, stomach cramping, fatigue, joint pains, tingling face and muscle weakness in right hand and arm. I would just go back to non gluten but I have an appointment with Dr. Lewey on August 6th. As some of you know, he is the guru GI doctor of the celiac world and I really want his opinion. I don't want to go through denial again in another year because I never had a firm diagnoses. I guess I am just venting that I feel so miserable right now. Does anyone have any suggestions to making the next 1 1/2 months more bearable?

As you already have a diagnosis, you should consider whether or not you've reached the "I will remember this" point of gluten misery such that you won't go into denial again and when you do reach it, cancel the appointment with Dr. Lewey and get the hell off gluten again. However, if you're committed to seeing Dr. Lewey, first call and see if you can possibly move the appointment up, stressing the many difficulties you're having on gluten. In the mean time, flood your life with comedy: funny books, funny TV, funny movies. Laughter may not really be the best medicine, but it certainly has the best side effects profile.

[ksymonds84]

As you already have a diagnosis, you should consider whether or not you've reached the "I will remember this" point of gluten misery such that you won't go into denial again and when you do reach it, cancel the appointment with Dr. Lewey and get the hell off gluten again. However, if you're committed to seeing Dr. Lewey, first call and see if you can possibly move the appointment up, stressing the many difficulties you're having on gluten. In the mean time, flood your life with comedy: funny books, funny TV, funny movies. Laughter may not really be the best medicine, but it certainly has the best side effects profile.

You are so right. What my husband and I decided is that I will do tests through enterolab. Dr. Lewey approves of Dr. Fine and tested himself and kids through him and recommends him to patients that keep having problems after testing negative to every test under the sun. He has an excellent article on gluten intolerance sensitivity on the main page of this site under Author blogs. So I will do enterolab so that I can quit eating gluten and still see Dr. Lewey in August. I want to make sure that I don't have something else as well such as Crohns ect that can go along with Celiac. I thought someone else responded to me about the possibility of Lymes but don't see it anymore. I will ask him. We don't have any ticks in my area but you never know. Thanks for your honest answer its greatly appreciated!