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Questions - How To Get Diagnosed?

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First time post looking for some sage advice. Sorry for the length but I thought some background may be helpful.

First let me say, I don't suffer from the normal or typical gluten sensitivity reactions. Never have. My gut and what comes out seems just fine. My grandmother was diagnosed over 60 years ago as having a "wheat allergy" but no one else in the family has issues with wheat or gluten.

History

I was diagnosed two years ago and treated for Scleritis (inflammation of the sclera) after a terribly stressful time in my life. Even though my eye is now fine, my blood work continues to show slightly elevated c-reactive protein and sed rate levels indicating inflammation somewhere inside. The rheumatologist said I don't have any autoimmune disorders so the cause of my Scleritis still remains a mystery. (He is not worried about the blood work results given they are not very high and my eye seems fine).

Not completely satisfied, I turned to a pharmacist here in town. He put me on an elimination diet for 4 weeks. As you probably guessed, when I added gluten back in I noticed a few problems.

First attempt: Gluten seemed to be fine until day 3. It was then I noticed I had trouble getting a deep breath and my nose was getting stuffy. I cut out the gluten and those symptoms disappeared.

Second attempt (inadvertently) 2 weeks later: I ate a dish prepared with Campbell's cream of mushroom soup. I didn't think or even consider it may have gluten. The next morning, I had trouble getting a deep breath again. Suspicious, I did a quick Google search and found out here that it does contain gluten. Then at lunch that same day I had chicken at our cafeteria which apparently had been dipped in a bit of flour before baking. About 6 hours later, I started sneezing, my nose got really stuffy, and I was again having trouble getting a deep breath. Next morning I was in a bit of a brain fog (didn't sleep well that night especially with the nasal congestion). I was also a bit achy overall, very mild, but I noticed it. That was 2 days ago and I've since been very diligent at cutting out the gluten sources again. I'm starting to feel better.

EDIT: I should mention that my degree of feeling good vs. feeling bad isn't drastic. I actually didn't realize I felt achy and sluggish until I actually did this elimination diet.

Questions

Is nasal congestion and trouble getting a deep breath related to gluten? I haven't seen these symptoms listed here but they seem to coincide awfully close to my ingestion of gluten. I go to my GP next week for a regular visit. Do I try discussing this with her? Without the typical gut symptoms, will I even be believed? Do I ask her for blood work testing - if so what should I request? Are there doctors that specialize in food allergies?

I guess I'm nervous because I've seen how many people here have much worse reactions that involve the intestines and yet their doctors still don't help them.

Any advice or thoughts about my next steps in even how to get diagnosed properly would be much appreciated!

Thanks

sue

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The trouble breathing sounds more like an allergy than an intolerance.

To get tested for celiac, ask your doctor for a celiac panel. You must be eating gluten for this. If you've been off it for some time, you will need to eat it for quite a while (opinions vary, but I've heard 4 months of every day consumption).

I'd also have allergy testing done (the kind that is a blood test) to see if there's a wheat allergy.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Food allergies can cause nasal symptoms. My ENT tested me for food allerges when the shots for my pollen allergies weren't working as well as expected. Eliminating th ones that showed up highly positive helped my sinuses considerably. Not to say you can't have celiac. I also didn't have digestive complaints until recently, but I am quite convinced I have celiac disease, or at the very least gluten intolerence for at least 8 years. Trust your intincts.


Celiac blood testing negative July 2007

Confirmed diagnosis of wheat allergy by skin test Dec 2007

Gluten-lite since July 2007 (didn't know all the hidden sources of gluten)

Gluten-free since December 2007

Life Long Symptoms

Extreme fatigue--needing 10-12 hours of sleep and still woke up exhusted

Allergic to everything--allergies remained out of control despite shots and strict enviornmental controls in my home.

Severe "sinus" headaches

More Recent Symptoms

IBS symptoms

Severe stabbing stomach pains that started 6 months before diagnosis of wheat allergy.

In my heart I feel it is more than an allergy and that I am gluten intolerant. This is based on my how eerily my childhood maladies match most celiac's histories, and my more recent increase in the severity of my usual symptoms and new digestive symptoms that have already started to subside on the gluten-free diet.

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Thanks for the responses. Based on your help, I've been doing more research into wheat allergies and I'm leaning more in that direction since my symptoms are mostly respiratory... although I do feel sluggish and achy too after ingesting wheat/gluten.

I guess I'm confused somewhat b/c I thought allergic reactions were more sudden. For me it takes several hours after eating wheat/gluten for the symptoms to kick in. So I'm assuming it is the later digestion of it that is problematic.

My grandmother also had a wheat allergy but I was taking that diagnosis with a grain of salt since it was so long ago. Did they even really know about Celiac sixty-plus years ago? She is no longer around so I can't ask her what her symptoms were (nor is my grandfather and even my father doesn't know).

Thanks again - this forum has been of TREMENDOUS help!

sue

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Thanks for the responses. Based on your help, I've been doing more research into wheat allergies and I'm leaning more in that direction since my symptoms are mostly respiratory... although I do feel sluggish and achy too after ingesting wheat/gluten.

I guess I'm confused somewhat b/c I thought allergic reactions were more sudden. For me it takes several hours after eating wheat/gluten for the symptoms to kick in. So I'm assuming it is the later digestion of it that is problematic.

My grandmother also had a wheat allergy but I was taking that diagnosis with a grain of salt since it was so long ago. Did they even really know about Celiac sixty-plus years ago? She is no longer around so I can't ask her what her symptoms were (nor is my grandfather and even my father doesn't know).

Thanks again - this forum has been of TREMENDOUS help!

sue

I'm new here too and found some similarities with your symptoms. When you say you've had a hard time breathing do you mean because you're stuffed up or does it feel like you just can't get a full breath into your lungs? So, what are your thoughts regarding the wheat allergy vs. celiac disease?

Thanks

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I'm new here too and found some similarities with your symptoms. When you say you've had a hard time breathing do you mean because you're stuffed up or does it feel like you just can't get a full breath into your lungs? So, what are your thoughts regarding the wheat allergy vs. celiac disease?

Thanks

The trouble with my breathing is primarily the hard time getting a deep / full breath. It also last the longest of all my symptoms - sometimes for several days - and is the most uncomfortable. I yawn a lot, not because I'm sleepy, but because sometimes the yawning actually helps me get that breath I need....sometimes it doesn't. The stuffy nose is a nuisance and makes it difficult to breathe when sleeping but not that bad during the day.

I'm also trying to piece together the need to be completely rid of wheat such as in my hair products. Lotions I can sort of understand as being absorbed into my skin but my detangler? I just don't quite get that yet. My grandmother, who had the wheat allergy, certainly didn't go to that level. She even made the MOST delicious rolls ever, even though she couldn't eat them herself. She handled flour and wheat products all the time.

As far as wheat allergy vs celiacs, I just don't know what to really make of it. There seems to be some sort of continuum and the lines are very blurry where one starts and the other ends: sensitivity vs allergy vs intolerance vs celiac. My main takeaway seems to be that anyone other than a celiac person can choose to eat wheat and just live with the uncomfortable consequences. Celiacs don't seem to have that choice, too much damage will occur. Still I'm very confused about all of it...but seems I'm in good company there! :)

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