Non-Celiac Gluten Intolerance X Egg Intolerance, Don't Feel Better Yet?

[ioet]

I apologize in advance for a long post!

The abbreviated question of this post is: "I've been on a gluten-free, egg-free diet and don't feel better after 5 wks, in fact I feel slightly worse, what does this mean?"

My naturopath diagnosed me with gluten intolerance & egg intolerance and I've been on an egg-free, gluten-free diet for about 5 weeks now. I'm also taking probiotics, L-glutimate & butyric acid.

I first started going to doctors in January when I noticed changes in my health: lots of burping, acid reflux and general discomfort in my stomach. My physician put me on PPIs which didn't help at all and made it worse. An upper endoscopy showed no problems, and a blood test was negative for Celiac.

When I finally went to my naturopath she had me do a food intolerance (stool/saliva) test, which said negative for soy/milk but positive for gluten (IgA 16) and egg (no number). Also it showed that I had inflammation in my colon.

In addition to my recent GI problems, I've been dealing with other stuff for a long while:

--fatigue (gotten worse lately, the diet has had no effect)

--left side chest pain

--Eustachian tube dysfunction

--very dizzy especially when turning my head (ENT says it isn't related to my ears), also worse recently

--forgetful of tasks to do, words, lack of focus especially in the last 2 months

--lost 15 pounds from Sept to March without trying

--neurological problems: had bell's palsy when I was 17, never healed fully, and have Raynaud's (white fingers)

Also I should mention that I had an ileocecal resection for an absess when I was 7 years old (I am 22 now, female) -- could have been colitis or diverticulits, but cause ultimately was unknown.

Anyway, what's surprised me the most is that I haven't really craved gluten at all -- I am wondering if it might be due to the supplements I've been taking? It's really odd since I used to eat so much of it!

BUT I still don't feel better, and my doctor suggested that I would after 2 weeks or at least 1 month. Any ideas? I haven't cheated on my diet at all although I think there must have been hidden gluten in at least some of the stuff I've eaten. There are only two things that have been odd since I've started:

--increased bowel movements, I've been going 3+ times a day consistently for the last month and that's very weird for me

--sometimes I get bouts of feeling worse than usual; I'll feel awful in my stomach or get super fatigued -- which makes me think I might have accidentally eaten gluten or egg -- but it's not too severe, so it could just be my typical stomach overreacting like it has been for the past 6 months.

I have an appt with my doctor next week so if anyone has some questions to ask or suggestions for what steps I should take next, I'd really appreciate it!

[mommida]

Keep a food journal.

Thyroid testing, there is a correlation with the auto-immune disorders

Get your vitamin and mineral levels checked. Celiacs tend to be lacking vitamin B12 and there is a connection to pernicious anemia from lack of intrinsic factor in the gut lining.

[Diane-in-FL]

I think your doctor is wrong to tell you that you will feel better in 2 weeks. For most of us, it takes many months or longer.....sorry, not what you want to hear, I'm sure. You are probably going through gluten withdrawal as well. It's too bad that some doctors tell their patients that they will feel better in such a short period of time because that leads to disappointment. But, stay here with us....you will learn a lot from everyone's experiences.

[ioet]

Thank you for the replies!

I am keeping a food diary and the only thing I've noticed that seemed to trigger something 1-2 days later was a certain type of palak paneer I ordered at the same Indian restaurant.

My B12 & folic acid levels were fine (checked it because of my past intestinal surgery). As for my thyroid, I had slightly low T3 which my regular physician said not to worry about..

I think I can handle waiting longer to see if I get results, but am I really not supposed to have noticed anything positive after 5 weeks??

Also as for the inflammation they found in my colon, I was under the impression that gluten problems usually caused damage to the small intestine - not colon - does anyone know anything about that?