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blahh

Help! Is It Celiacs? Onset Of Symptoms After Emotional Experience.

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Waiting on unlikely diagnosis and symptoms are ruining my life.

Occasional constipation

Occasional nausea

Stomach cramps

Upset stomach

Bad gas (smelly and usually at night)

BLOATING (gets worse as the day progresses)

Occasional Reflux/Indigestion (discomfort under chest bone)

Anxiety attacks (sweaty, trouble breathing)

Trouble catching my breath often (no specific cause

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Your symptoms sound consistant with celiac disease. It can be triggered or activated by emotional trauma. I suspect that's what happened with one of my family members. Are you in the process of being tested?


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

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I would get tested if you aren't already in the process of that, many of your symptoms could be related but could also be something else but not being a dr I could guess what they would be.


Just my .00000002 cents worth

If I knew what I was doing years ago I would have half a clue today!

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Welcome,

Yes many of your symptoms are those of Celiac. My Celiac was triggered by stress. The worst of my symptoms occurred in one day.

I noticed that you said you were "wheat free", perhaps if you were "gluten free" your symptoms may improve. But then, if you choose to be tested, as said, you must consume a gluten diet.

Your "wheat" intolerance may have been triggered by your stress into Celiac.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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A lot of your symptoms (but not all ) could be related to high anxiety and stress. Have you seen a gastroenterologist for your gut issues?


CeeCee

Allergic to: wheat, peanuts and Penicillin

1995 severe anaphylactic reaction to Wheat

Gluten free since Sept. 2006

"Failure is only the opportunity to begin again, more intelligently"--- Henry Ford

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I just got the blood tests back that confirm it is not celiacs and the internist believes the symptoms are from stress and anxiety. I am in A more relaxed setting now and feeling better but the only things that still bother me the most are the tiredness during the day, low energy, bloating and discomfort in the stomach and gas.

What could the gastro test for or find?

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Waiting on unlikely diagnosis and symptoms are ruining my life.

Occasional constipation

Occasional nausea

Stomach cramps

Upset stomach

Bad gas (smelly and usually at night)

BLOATING (gets worse as the day progresses)

Occasional Reflux/Indigestion (discomfort under chest bone)

Anxiety attacks (sweaty, trouble breathing)

Trouble catching my breath often (no specific cause


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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My own experience with blood tests is that 1) many if not most doctors may not know exactly which tests to order--in my case an incomplete set of tests was ordered, and 2) a lab may not be familiar enough with what to look for and 3) your condition may not yet be severe enough to produce antibodies in the blood.

I was very sick yet for me a blood test was negative, probably because while I had minimized eating gluten (not deliberately, just sort of unconsciously because I knew it bothered me) for years, I guess this could account for why it didn't show up in blood tests. Yet I was sick.

I learned that depending entirely on doctors and traditional approaches to testing was useless. The general medical ignorance about celiac disease in this country is truly astounding. Plus I had the experience of my mother, who nearly died from malabsorption after a long string of doctors couldn't figure out what was wrong with her and all of whom told her it was an emotional problem. Thankfully, she finally encountered a doctor who was familiar with celiac disease, and he literally saved her life. At the time of diagnosis she weighed 85 pounds and was in very sad shape.

My suggestion is to become VERY proactive....get a bunch of books and read them front to back so you understand what you are up against. If you can't locate a knowledgeable doctor (yes, interview doctors to find out what they know....if you've done a moderate amount of reading, you really can determine whether or not a doctor knows about celiac disease. I had one doctor tell me that I knew more than he did about it!!!!). If you can't find a good doctor to guide you, perhaps consider alternative testing such as Enterolab.....it won't diagnose you, but you can learn a lot about what is going on in your body.

Through reading you will also come to understand that even if you don't have the thus-far identified celiac genes (and there may be some genes which are as yet unidentified!!), you can still be gluten sensitive, which is not to be dismissed. If you are "only" gluten sensitive, you can have most of the same symptoms as celiac disease, and you can get just as sick. The only difference may be that you don't get the villi damage. But you can still get very very sick, and damage in your body can occur. Gluten sensitivity is emphatically not a big nothing as some doctors may imply.

We have a tendency to think doctors must know everything about everything. Not true. Celiac disease is studied virtually as a casual mention in medical school, and most doctors don't encounter (or recognize it) in their practices. Therefore, they don't really know about it, and worse, are never looking for it since they are unfamiliar with how it manifests itself.


CAROLE

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

Enterolab 1/2006

IgA & tTg Positive

DQ2-0201 (celiac) and DQ1-0604 (gluten)

Casein IgA positive

Mom has 2 celiac genes

Both kids have a celiac gene.

Lots of celiac disease in my family, both sides.

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Wow! Thank you all so much for your great responses!!

I will definitely do a hormone check and am making an appointment and a alternative medicine center.

I do have copies of my blood work and the AGA IgG and the IgA are both negative...So I think that rules out celiacs? I'm not sure how it works.

I dont really want to believe that this is all stemming from an emotional problem/stress as the gastro suggested as i really belive there is something wrong with me....so i am adamant at finding the root of the problem.

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Keep in mind that a negative blood test means nothing. You still could have celiac disease, especially considering that you are intolerant to wheat. Make sure you are tested by a doctor who fully understands celiac disease testing. Good luck,

-Brian


Celiac Sprue

Multiple Food Allergies

Diagnosed June 2006

Stopped Eating June 2007

IV Nutrition: 6/27/07 - Present

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Your doctor didn't run the full Celiac panel, which includes more specific/sensitive tests than were run. The complete panel that should be done includes:

AGA IgA

AGA IgG

EMA IgA

tTG IgA

Total IgA.

However, because you are on a wheat free diet, your results may skew to a false negative. The blood tests measure your body's response to gliadin. If you take out a huge chunk of gliadin (i.e., wheat), it may be harder to test positive for it if you actually have it.

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I had a couple of blood tests over the years, both negative. Despite that, I still had symptoms. You DO NOT have to have celiac disease to have symptoms.

When I had the Enterolab stool tests and gene test, they showed elevated antibodies, so reactions definitely were going on. I emailed Dr. Fine @ Enterolab, and he said one possibility was that I was having reactions, but perhaps not enough villi damage had yet occurred to allow antibodies into my blood stream. This is why the blood tests were negative. I have since that time read that intestinal damage must be quite severe for it to be shown in the blood.

The assumption that you must let things get that bad to get a diagnosis is really bad. A huge amount of damage can occur prior to it showing up in a blood test. This is the part that doctors apparently don't all realize yet. Dr. Fine feels quite strongly about it, though....if you have the gene, if your stool tests show antibodies, you must stop eating gluten even though the traditional (45+ year old method) blood test doesn't yet show anything.

I read about a case where celiac disease was diagnosed when a person was being treated for stomach cancer (higher rate of this among celiacs).

The blood test is woefully inadequate for early detection, so keep that in mind. It's inadequate, the idea is outdated, and most doctors don't understand this.


CAROLE

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

Enterolab 1/2006

IgA & tTg Positive

DQ2-0201 (celiac) and DQ1-0604 (gluten)

Casein IgA positive

Mom has 2 celiac genes

Both kids have a celiac gene.

Lots of celiac disease in my family, both sides.

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