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hot_mermaid

Negative Ttg - What Next?

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Good Morning All,

I need a little advice/reassurance that I am doing the right thing....

(Apologies this is a LOOONG post!)

The last 6 months have seen me have lots of symptoms which I was unsure of the cause:

- Gastro (LBM)

- Spasms

- Nausea

- Weight gain

- Depression (swinging modds associated)

- Rash on scalp and legs

My GP had refered me to a GI specialist (appointment is 25th Feb) and I asked him at the time whether I could have developed food intollerences - he said no, nothing like that could develop without trauma (???). Silly me didn't realise Mr Doctor would not have put allergy or celiac in the same category.

After a conversation with one of my friends, I realised my diet had changed considerably over the last 8 months - from Rice, veg and meat, to pasta, pizza, bread, and cakes. She thought it might be worth looking into the possibility of a food issue. So with the internet at hand I did some digging. The symptom sorter on the Mayo Clinics website pointed me to the possibility of Celiac. (I honsetly before this thought only children can have celiac).

Over Christmas i had a two week trial of gluten free - and I felt amazing. Almost all of my symptons reduced in the matter of a few days. After speaking to my doctor about this it was decided that I should "gluten up" to get my blood work done. I spent two weeks on a gluten diet, and felt like I was in hell. All the symptoms returned with avengance. I have never been so low. My physical symptoms were vile, and my mental health syptoms were just about as dark as it gets. Needless to say I worried my friends and family enormously. Me almost falling asleep 10 mins after having a slice of toast kind of hit home to them!

THe bloods were done two days after I went back to gluten-free (Dr said this would be ok and the results would still be valid). That was two weeks ago, and I now feel ontop of the world with most symptoms disappeared and others retreating nicely.

On Thursday I got my bloods back and my TtG is NORMAL - no action required. This is where I start to panic. I know the next logical thing would be to "gluten-up" and get an endoscopy done, but I just can't do that to myself again. I was a wreck the last time, and I certainly wouldn't be able to work in that condition.

So here's me thinking logically - I stay gluten-free with the knowledge that I may have either a severe gluten intollerence or celiac. And just continue on without a firm diagnosis. I think this is the right thing to do....

Just need a little reassurance!

THANK YOU

Mermy XX

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Celiac.com Sponsor (A8):

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Yes - I agree with your thinking, of remaining gluten-free and feeling well. I'm sure others will say the same. I, like many here, have not sought any "official" diagnosis. Years of suffering with numerous clueless doctors tell me it would be a total waste. That's my take on it.

The only thing you need to decide is which is more important: what a doctor tells you, or what your body tells you.

If I'm not mistaken, it takes far longer than two weeks on gluten for tests to become reliable enough to bother with them. Even then, many get false negatives.

I'm glad you've found the answer so quickly. Many do not.

Welcome to the board!


A spherical meteorite 10 km in diameter traveling at 20 km/s has the kinetic energy equal to the calories in 550,000,000,000,000,000 Twinkies.

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Hi

I am one who does not have an "offical diagnoses" I tested negative for all the test, but I do wonderful on the diet. I had gone to my General practice doctor for a general physical and he did have all my labs and pictures from my GI of my scopes and he did not know what Celiac was never heard of it until me and he said that if my diet is helping me then that is all I need for a "diagnoses" I really appriciate his telling me that he really did not know anything. I know that I am taking a risk but I did order and sent off for the Enterolab and I am kinda hoping that it will say something because not having an offical diagnoses IS hard, so now I think that seeing what my numbers are will help me alot.

donna


Fecal Antigliadin IgA 21 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 13 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)

Fecal anti-casein (cow's milk) IgA antibody 12 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 0501

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)

You can teach an old dog new tricks!!!

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Some people do not have damage. There has been little to no studies done of those who can't eat gluten but test negative. The university of chicago is finally doing a trial of people who test negative both blood and biopsy but yet respond to the gluten free diet. IT will be interesting to get their final research. Their website says they have identified new markers and that might broaden the Celiac dx. i went gluten-free after having to put the baby on the diet and amazing things have cleared up since then. i would listen to the response you get from the diet and not worry about testing.

Stacie

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