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harleyridnusmcbrat

When Your Upper Gi Guy Bets You A Free Endoscopy...

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That's pretty much a bad sign, right? Gracious, this journey is long, tiring, and frustrating.

For starters, at 16 I started to get bouts of nausea - those bouts turned into me throwing up at random in the mornings and then hitting a peak that landed me in the hospital at 19 after having been put on Reglan at 18 for a misdiagnosis of GERD. They decided I had H. Pylori and stuck me on a PrevPac - add a few years, random bouts here and there and some 4 PrevPacs later... At 22 I started experiencing neuralgia in my limbs - numbness and tingling - it was awful! I went from being an active fencer (swords) and 20-something year old to frustrated, losing feeling, having every Rheumatological and Neurological test humanly possible run because no one could figure out what was wrong. FINALLY at 24 my thyroid popped up to 7 and they said Hashimoto's and Raynaud's. My stomach was still sensitive but it seems sensitive to acids and whatever, and it was just an ebb and flow thing - I could go months and months without issues and then, voila! Praying to the porcelin god, so Celiac never occurred to me.

I asked my doc for a referral to an Upper GI guy because I wanted to know what my stomach and esophagus looked like seeing as I've been wreaking havoc on my lining for the last 11 years. We talk and I give him my case history and he kind of smiles and says, "I'd wager to bet you a free endoscopy that you have Celiac". I almost shanked him - ok, not really, but in my head I did lol. I'm a baker! Not by trade, but I bake ALL. THE. TIME! How dare you tell me you think I have Celiac! I also come from a Southern family! Gravies my friend, gravies! This man is trying to ruin me! This is 3 days after my 27th birthday and 2 days before I leave for Ireland. I wanted to cry. So...instead of doing something about it I ignore it, go to Ireland, come back and plan a friends rushed wedding, get sick at her bachelorette party (not drinking because I was the DD - thank you stomach, I hate you too), welcome a niece, and a goddaughter, have Thanksgiving, have Christmas, welcome a new year, meet a boy...and now I feel like crap, go back to the doc, she runs my blood tests that the Upper GI guy ordered and I never had done (I know) and I'm going back to my Upper GI guy next week...

Raise your hand if you think I have Celiac.

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Oh geez. I think you should be tested, how's that?

I'm from the south, too. I love(d) to bake, too.

You can adapt your cooking to Celiac, I promise. Baking is more of a challenge, but it can be done.

Get tested. Goodness, you have a doc who sounds supportive. That's worth a lifetime of biscuits right there.


Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.

Hashimoto's DX 2005.

Gluten-Free since 6/2011.

DH (and therefore Celiac) dx from ND.

Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

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lol - right? I'm definitely blessed with a great doc! She ran my blood tests on Friday, didn't chastise me; just kind of gave me that look and smiled. I have my other doctor's appointment with my Upper GI guy next week. I didn't want to hear another diagnosis on top of the Hashimoto's, Raynaud's, and Migraines (have had those since I was 14). It's foolish I know, but I'm turning 28 and it's high time I took control of it all and just sucked it up.

Are there tests outside of the Endoscopy and the blood tests that were run that they do?

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I'll raise both hands and wave them. You do sound like one of us. They should do vitamin and mineral panel. If your celiac tests are positive it is a good idea to have a bone scan done. Even if your tests are negative after testing is finished do give the diet a good strict try for a few months.


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)

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 in time with proper diagnosis of Celiac November 2002

 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)

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You are finally on the right path, I believe. Who knows, you might even ditch those nasty migraines :rolleyes::)


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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Welcome ,** waves hands in air**

Welcome to the club that no one wants to be a member of .

Once here you will find many ears that will hear you,the support you need to do this , a great wealth of knowledge and all the ((HUGS)) You ever need :)


Gluten free Oct/09
Soy free Nov/10

 

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2 hands waving here. Maybe we can get the wave going like they do at those sports events. :) Definitely try the diet after your testing is done. Tests are not 100% reliable so the diet trial is the only way to know for sure, unless a test is positive that is. Positive tests are almost always correct.

A good trial is 3 or more months. It can take that long or more to get results and also understand how to avoid gluten. Although many people experience positive changes in a couple weeks or less.

Starting off by avoiding processed foods is very helpful. If you avoid all the processed gluten-free things and stick with mostly whole foods it is simpler to avoid gluten. Ireland sounds great though! :D

We need to talk to our recruiting section soon, they are doing way to good a job of things lately. But welcome to the the site! :)


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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*hand raised*

Welcome to the world of almond meal, superfine rice flour, tapioca starch, and coconut flour. You CAN bake perfectly well gluten-free and try some arrowroot starch for your gravy. B)

Since you have neuro symptoms, do give the gluten-free a try even if the GI stuff is inconclusive. There are no tests for celiac-caused neurological autoimmunity. You'll have to be strict on the diet to heal your nervous system - it doesn't self-repair fast like your gastric mucosa.

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lol - right? I'm definitely blessed with a great doc! She ran my blood tests on Friday, didn't chastise me; just kind of gave me that look and smiled. I have my other doctor's appointment with my Upper GI guy next week. I didn't want to hear another diagnosis on top of the Hashimoto's, Raynaud's, and Migraines (have had those since I was 14). It's foolish I know, but I'm turning 28 and it's high time I took control of it all and just sucked it up.

Are there tests outside of the Endoscopy and the blood tests that were run that they do?

You might be one of the fortunate ones who find that a gluten-free diet helps all those other conditions (once you've been through the testing of course!). There is a definite correlation between Hashimoto's and celiac, not to mention that Raynaud's also is often closely associated with thyroid issues. Migraine can be triggered by gluten...it was in my son.

So, it might be a very good thing to find out for sure! Rather than thinking of it as the burden of "one more diagnosis" is could be the key to feeling a lot better!

I hope so!


1999 - Hypothyroid

2003 - Hashimoto's Disease

2008 - Diverticulitis

2009 - Significant Vit D Deficiency

2011 - Diverticulitis again

2011 - HLA-DQ2.2

2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

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Hi Harley,

Don't fear, you won't have to give up baking! It will take some work but two friends who have a catering business converted their entire business to gluten-free about three years ago, and nobody noticed! Bread, rolls, desserts, everything. And they make everything from scratch. She is the one who brings all the bread recipes to our monthly GiG meeting. And when I say, 'nobody noticed', that isn't entirely true. They cater a monthly Rotary lunch meeting, and they have had a couple people come up to them and tell them (paraphrased), "You know, I always have an upset stomach after I eat except at your lunches."

And what is your avatar pic ? I know it isn't the Butterfly Nebula, but I can't place it and it's bugging me!


Undiagnosed for 20 years since first symptoms.

March 2009 - Negative Blood work

April 24, 2009 - Gluten-free

April 29, 2009 - Notably positive response to gluten-free Diet.

May 2, 2009 Dairy Free

May 6, 2009, Soy Free

May 27, 2009 Enterolab Results: Positive Anti-gliadin IgA, tTG IgA, Casein, HLA DQ2.2, HLA DQ8

June 4, 2009 Refined sugar free (except Raw Honey, pure Maple syrup)

June 29, 2009, Dad diagnosed Celiac by GI specialist via blood work and dietary response.

July 2009, Dad's gene test: double DQ8! Thanks Dad - I'll try to get you something nice for Christmas! :)

August 8, 2009 Really Soy free this time - Thanks Blue Diamond for the soy lecithin in the almond milk! :(

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they said Hashimoto's and Raynaud's

That's me too! Either the celiac or the Hashimoto's has given me gastroparesis which is also unpleasant, but can be managed with diet and such. I bake every week. Here's my all purpose flour:

1 cup tapioca flour/starch

3/4 cup sweet rice flour (or more potato/tapioca)

1 1/2 cup sorghum

1 cup millet

1/2 c brown rice flour (or more sorghum/millet)

1 1/4 cup potato starch

5 tsps xanthan or guar gum

Hope you get it all figured out!

Chopper

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Korwyn... Does your catering friend know about the new National Gluten Free Business Forum? It just started in June in Portland but is growing. i went to my first meeting the other day and there was a great speaker and lots of different companies from bakeries to manufacturers to food carts to heath coaches to doctors represented. The website is going to launch soon but there is already a fb page. They are all set up to help new chapters start across the USA. I hope she gets in touch!


Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.

Gluten-Free since November 2010

GAPS Diet since January/February 2011

me - not tested for celiac - currently doing a gluten challenge since 11/26/2011

partner - not tested for celiac

ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.

dd - age 12.5, not celiac, has Tourette's syndome

both kids have now-resolved attention issues.

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DA, I don't know. I'll ask her about it! Thanks for the heads up!


Undiagnosed for 20 years since first symptoms.

March 2009 - Negative Blood work

April 24, 2009 - Gluten-free

April 29, 2009 - Notably positive response to gluten-free Diet.

May 2, 2009 Dairy Free

May 6, 2009, Soy Free

May 27, 2009 Enterolab Results: Positive Anti-gliadin IgA, tTG IgA, Casein, HLA DQ2.2, HLA DQ8

June 4, 2009 Refined sugar free (except Raw Honey, pure Maple syrup)

June 29, 2009, Dad diagnosed Celiac by GI specialist via blood work and dietary response.

July 2009, Dad's gene test: double DQ8! Thanks Dad - I'll try to get you something nice for Christmas! :)

August 8, 2009 Really Soy free this time - Thanks Blue Diamond for the soy lecithin in the almond milk! :(

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