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Which Doctor Next? Allergist? Neurologist? Gastro?


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#1 newgfcali

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Posted 27 March 2010 - 04:22 PM

Our story so far...

After 5 months of being gluten free and taking some Enterolab tests, I now know I'm non-celiac gluten intolerant. I'm a double DQ1, which research has found to be super sensitive to gluten, with a side of neurological problems. I've got a positive dx for peripheral neuropathy. Enterolab says I'm also sensitive to soy, casein, and yeast.

Been off gluten since October and eliminated soy, casein & yeast in Feb/March.

Although I am feeling better mostly, I'm still having ongoing issues. Some days I'll be just fine, really feeling fantastic, then other days I'll be wiped out, have all-day diarrhea and feel pretty much like something the cat dragged in. I know the neuropathy isn't going to resolve overnight, but on bad days it's noticeably more painful.

Since I'm careful to the point of paranoia about staying away from the 4 poisons I know about, I suspect other food intolerances are tweaking me. I'd really like to get a bunch of foods and additives tested all at once, rather than testing one food at a time. But who should I be working with? A neurologist who understands the neuropathy? A gastro who gets the GI issues? An allergist/immunologist who digs the chemistry? A naturopath who might take a more holistic approach? Up until now I've been going it on my own, doing my own research and ordering the tests directly.

I'd love to hear what y'all would think the best choice would be. If money were of no concern, I'd put together a dream team, one from each discipline. But since I don't have a diamond mine in the back yard, I have to choose.

Thoughts? Ideas?
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#2 Wolicki

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Posted 27 March 2010 - 06:47 PM

Let me preface this by saying that not all doctors are bad. And some people here may have had intolerance testing that was legitimate.
These are my opinions, based on personal experience, not facts and quotations.
Most doctors don't understand anything that is not black and white. For instance, you do not have a food allergy. An allergy test will be negative. Therefore, nothing is wrong with you. And then most will say thank you very much, pay your bill on the way out.
Celac and gluten intolerance falls about as outside of the standard 10 minute HMO visit as you can possibly get. I think that most doctors don't have the time or resources to figure out all the really weird things that go on with us.
As for intolerance testing, I think the only thing that has been "perfected" in the Enterolab gluten sensitivity test. There are lots of other tests out there, but are they a bunch of hogwash? In my opionion, yes. JUST MY OPINION ONLY.

I had 9 doctors before I was diagnosed. None of them could figure out what was wrong with me. It was only after I became so emaciated that I looked like I would keel over that ONE doctor finally figured out what was wrong. I searched high and low for doctors, and ended up figuring it out with a little help from my "friends," here on this site.

I did an elimination diet. And of course it was tough, especially for a foodie like me. My intolerances were all grains, corn, dairy, nuts, seeds, nightshades, legumes, cruciferous vegetables. It took a while to figure it out. And it was hard, did I mention that? :D

So, if I were me starting over again, I would skip all the doctors (since I already know that gluten is my problem) and take complete charge of my own health with regard to food issues and recovery. It would have saved me so much frustration and sitting in doctor's offices crying my eyes out and being told "it's all in your head." And I would have started with an even more strict elimination diet. It would have been so much quicker.

I really wish someone had told me to stop looking for answers with doctors who are just too busy to learn the nuances of celiac recovery. I have a great DO now who understands Celiac and is fabulous, but I don't "need" him for Celiac stuff now. I just need him when I get a bug, etc. I hope that helps, and if you still want to pursue testing, I support you 100%. Just sharing my experience.
Be well.
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Gluten free is not so bad! If you are new, hang it there, it gets easier!

#3 ravenwoodglass

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Posted 28 March 2010 - 03:11 AM

I would go with an allergist for an elimination diet. They will test you for true allergies and formulate a starting point for the elimination that will be designed for you. It will be complete nutritionally and designed so you get enough calories. It can be hard to find an allergist who will guide you through the elimination process so do ask before you make the appointment. I would be dead if it were not for a very elderly, very savvy allergist. Without him I would have never have been diagnosed as all other doctors would only look at my negative bloods and consider celiac ruled out.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#4 missy'smom

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Posted 28 March 2010 - 05:56 AM

I would go with an allergist for an elimination diet. They will test you for true allergies and formulate a starting point for the elimination that will be designed for you. It will be complete nutritionally and designed so you get enough calories. It can be hard to find an allergist who will guide you through the elimination process so do ask before you make the appointment. I would be dead if it were not for a very elderly, very savvy allergist. Without him I would have never have been diagnosed as all other doctors would only look at my negative bloods and consider celiac ruled out.



Yes, I second that. That's what we've been doing. A good read is Food Allergies and Food Intolerances by Jonathan Brostoff, M.D. and Linda Gamlin.
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Me: GLUTEN-FREE 7/06, multiple food allergies, T2 DIABETES DX 8/08, LADA-Latent Autoimmune Diabetes in Adults, Who knew food allergies could trigger an autoimmune attack on the pancreas?! 1/11 Re-DX T1 DM, pos. DQ2 Celiac gene test 9/11
Son: ADHD '06,
neg. CELIAC PANEL 5/07
ALLERGY: "positive" blood and skin tests to wheat, which triggers his eczema '08
ENTEROLAB testing: elevated Fecal Anti-tissue Transglutaminase IgA Dec. '08
Gluten-free-Feb. '09
other food allergies

#5 newgfcali

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Posted 28 March 2010 - 07:33 AM

Wolicki, I totally agree with you about doctors -- I've had no luck with them either. But I've done as much as I can do without getting a doctor involved (I think).

Raven & missy'smom - I will look into allergists in my area and try to find one knowledgeable about intolerances and elimination diets. Missy'smom, I've also ordered the book you suggested. Looks very helpful.

Thanks, ladies. I value your opinions greatly. I don't know what I would do without this forum. You're all so helpful and supportive. :)
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#6 lizzers

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Posted 01 April 2010 - 08:07 PM

The only thing that worked for me was an elimination diet and writing down meticulously what I ate and how I felt. I wasn't super strict on this, but I found out that after I ate eggs, I would get really bad ezcema, and I would get tired - so I was talking with my mom, and she says "Oh, you were allergic to eggs as a kid - you didn't really eat them until you were five or six". So, I went off of them. Then I found out that I had horrid gut aches when I drank regular milk - so I stopped that.

I would first go with the foods that you think you should eat - or start with staples that you would rely on say if you were sick, or had a cold or something. Eat that for as long as you can, then start adding things in. It is a long process, but very very productive.

Allergy tests, I think, are bunk. I had allergy tests done - none picked up on the eggs, none picked up on my lactose issue (of course). But with gluten, eggs and milk out of my diet, I feel almost normal.

Well, as normal as I can feel :-)


Our story so far...

After 5 months of being gluten free and taking some Enterolab tests, I now know I'm non-celiac gluten intolerant. I'm a double DQ1, which research has found to be super sensitive to gluten, with a side of neurological problems. I've got a positive dx for peripheral neuropathy. Enterolab says I'm also sensitive to soy, casein, and yeast.

Been off gluten since October and eliminated soy, casein & yeast in Feb/March.

Although I am feeling better mostly, I'm still having ongoing issues. Some days I'll be just fine, really feeling fantastic, then other days I'll be wiped out, have all-day diarrhea and feel pretty much like something the cat dragged in. I know the neuropathy isn't going to resolve overnight, but on bad days it's noticeably more painful.

Since I'm careful to the point of paranoia about staying away from the 4 poisons I know about, I suspect other food intolerances are tweaking me. I'd really like to get a bunch of foods and additives tested all at once, rather than testing one food at a time. But who should I be working with? A neurologist who understands the neuropathy? A gastro who gets the GI issues? An allergist/immunologist who digs the chemistry? A naturopath who might take a more holistic approach? Up until now I've been going it on my own, doing my own research and ordering the tests directly.

I'd love to hear what y'all would think the best choice would be. If money were of no concern, I'd put together a dream team, one from each discipline. But since I don't have a diamond mine in the back yard, I have to choose.

Thoughts? Ideas?


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