My Story

[MJ-S]

I've been gathering so much incredible information on this board for the last few months - I just wanted to introduce myself and share my story! I've also been meaning to document everything with a timeline, so hopefully I apologize in advance for TMI. I figure there is no better audience!

March 2010: I started getting sick. It was very sudden (no illness to bring it on, however) with daily nausea, gas, stomach pain/cramps, no D, mild C (I've always had that), a non-itchy rash on my arm, swollen eyelid, and a super white stinky tongue that would come and go.

April 2010: I linked my symptoms to dairy and discontinued it. Symptoms would begin about one day after consuming dairy and last 3-4 days. Immediately after stopping dairy, my eyelid returned to normal and has never resurfaced; initially all other symptoms eased dramatically. Still, I kept getting sick now and then and I drove myself crazy looking for hidden sources of dairy in my diet. My primary doc told me I was lactose intolerant but refused to test for it. I told her I thought I was casein intolerant. She referred me to an allergist who did skin testing, all negative, but didn't know about the casein test.

May - Sept 2010: Symptoms gradually worsened. A few dairy tests (tiny amounts of lactose free milk, goat cheese) put me in bed for days. I was getting new symptoms (daily dizzy spells and angular cheilitis) along with fatigue, and worsening GI symptoms. Constant daily nausea returned. Returned to doc, who tested for Celiac (negative) along with other standard bloodwork. My B12 levels were borderline low. I was referred to GI doc who did nothing (also told me I was lactose intolerant but didn't want to test for it). He did one good thing which was to refer me to a wonderful nutritionist. She, in turn, referred me to a more responsive GI doc AND told me I might be GLUTEN INTOLERANT. I refused to consider that as a viable option at the time.

Oct-Dec 2010: Underwent a battery of tests with new GI doc. Bloodwork (re-tested for celiac, still negative), X-rays, ultrasound, endoscopy, gallbladder. All normal except stomach was found to be red (mild gastritis) and gallbladder was functioning at 88% (doc said that was normal). Folate levels were elevated. I was told to go on FODMAPS diet and take probiotics, along with weekly B12 spray. Continued to get sicker and sicker. New allergist re-skin tested but also refused to do the casein test (said it's unreliable).

Jan 1, 2011: Based on the advice of my nutritionist (note that NONE of the 5 docs I saw suggested this) I decided to try going gluten free. FODMAPS wasn't working and I was desperate. By Christmas I could barely function and everyone was saying how thin I was. I was, however, still consuming low quantities of wheat. I figured it would be easier to eliminate gluten than the entire FODMAPS spectrum. Within days of eliminating gluten I felt SO MUCH better!

Jan-Feb 2011: I improved but still had some gas/pain/brain fog (generally never as bad as it had been). Then I discovered that one of the soymilks I was buying had barley/wheat extract in it. That was a BAD day - I was so discouraged! After that, I got even better. At my follow-up with GI doc, I told him I was gluten intolerant. He said: not possible with negative celiac tests. He told me I had IBS, that I felt better because of wheat (fructose) elimination and sent me on my way. I won't return. Luckily I live in Boston and now know about the Celiac Center.

March 2011: Overall, my energy has returned, my mood is lifted, and GI symptoms have really eased up! The arm rash is almost gone (although not totally). I've had a few more mis-steps. A few weeks ago it was a piece of crabstick at a sushi restaurant - I had pain, extreme fatigue, and brain fog for almost a week. That incident removed a lot of doubt left in my mind. I also found out last week that the Pearl probiotic I've been taking has trace dairy, so I've just discontinued it (beware because the old box says dairy free, but the new box does not, and when I e-mailed the company they confirmed that it's derived from dairy and thus had to change the label). Since last night I've been suffering pretty bad stomach pain because I bought store-made split-pea soup at Whole Foods. The ingredients are a go, but I get nervous anytime it doesn't specifically say Gluten/Dairy Free. It's also one of my first forays in a while into the legume world, so I'm not sure if that's the problem.

So here I am! Happier, less gassy, and usually less pain free! Definitely more energetic, and starting to get a bunch of new favorite foods (the Foods by George english muffins are just sinfully good)! Looking forward to lots of great conversations!

[kwylee]

Excellent gluten travel story and so pleased to see it has the promise of a happy ending. I love the part where the doctor tells you that you can't be gluten intolerant. He probably went home, ate a big steaming bowl of "healthy" whole wheat pasta, and one chance out of three, felt bad later but didn't connect the dots. You are so far ahead of the game! Glad you are feeling better.

[YoloGx]

Welcome! Your story is not atypical. Most of us have resistance to going on a gluten free diet etc. so ist takes a while before we decide to bite the bullet and do it.

And like the other poster intimated, many doctors aren't aware of severe gluten intolerance without it being celiac. Further, just as an aside, many of the tests for celiac are inadequate. In the future I am betting they will reconsider and improve their approach.

But for you, as it is for many here, its important to know being off gluten (and possible additional allergens or sensitivities from likely leaky gut syndrome) is the main thing to have improved health.

[MJ-S]

But for you, as it is for many here, its important to know being off gluten (and possible additional allergens or sensitivities from likely leaky gut syndrome) is the main thing to have improved health.

Yes, that's been key. I've kept a food diary throughout the process; with that and the allergy testing (positive for plums, hazelnuts, sesame - all of which I avoid) I've wanted to be "totally sure". I also hope that maybe one day I'll be able to have dairy again, which I dearly miss (much more than gluten).