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Omg- I Got A Diagnosis!

Guest BERNESES

By Guest BERNESES
in Post Diagnosis, Recovery & Treatment of Celiac Disease

Recommended Posts

sasha1234 Newbie
sasha1234
Posted

hey,

I'm new to all this.

I'm 19 and had been off of gluten for the past 4 years after years and years of undiagnosed stomach problems. I stumbled onto a gluten-free diet accidently after going on an elimination diet to determine the cause of some other symptoms, for an unrelated health problem, and amazingly enough gluten-free felt amazing. I have tons of other allergies and health problems but wheat and gluten never seemed to get identified as being problomatic. However this summer I was hospitalized with a really bad C-Diff infection and never properly healed so when they decided to do scoping for that they decided they might as well test me for celiac. I have been back on gluten for the past 6 weeks (6 weeks of hell as you all know too well)leading up to the scopes and I had my gastroscopy and colonoscopy and biopsies done this morning and have been tentatively diagnosed as celiac from what they could see. My blood work 2 months ago prior to my going back on gluten was negative (no surprise there) and I had the blood tests done again today aswell so now it's just a matter of waiting for my results.

What is the HLA DQ8 gene and DQ2 that you guys have been talking about? Also, I don't seem to fit the profile of most celiacs. For me, gluten makes me put on insane amounts of weight... I weighed 120lbs 6 weeks ago and now am sitting about 146lbs. This is one of the primary reasons no one has suspected me of being celiac though it has certainly baffled my doctors that I can put on that much weight that quickly without any effort. When I first went off gluten 4 years ago I lost a huge amount of weight and I expect this to be the case now that I ge to resume my gluten-free diet once more. Have any of you had anything like this? Or did you all suffer from weight loss on the gluten diet. I'm curious to know because my dad has suffered from weight problems all his life as well as gout and I'm wondering if I do in fact have celiac, that he might suffer from it aswell. Either way I will urge him to get tested.

Thanks for any advice you can offer. It's awesome knowing there is a whole community of people out that that know how painful this process can be!

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debmidge Rising Star
debmidge
Posted

Wishing you the road to good health now that you have been shown a diagnosis.

Congratulations!

D.

Guest nini
Guest nini
Posted
hey,

For me, gluten makes me put on insane amounts of weight... I weighed 120lbs 6 weeks ago and now am sitting about 146lbs. This is one of the primary reasons no one has suspected me of being celiac though it has certainly baffled my doctors that I can put on that much weight that quickly without any effort. When I first went off gluten 4 years ago I lost a huge amount of weight and I expect this to be the case now that I ge to resume my gluten-free diet once more. Have any of you had anything like this? Or did you all suffer from weight loss on the gluten diet. I'm curious to know because my dad has suffered from weight problems all his life as well as gout and I'm wondering if I do in fact have celiac, that he might suffer from it aswell. Either way I will urge him to get tested.

Thanks for any advice you can offer. It's awesome knowing there is a whole community of people out that that know how painful this process can be!

I was extremely overweight before my dx of celiac... no matter what diet I had tried I wasn't able to lose any weight. After going gluten free, I have lost over 100 pounds in a little less than 3 years... So yeah, weight gain is def. a symptom and problem with some celiacs.

Judyin Philly Enthusiast
Judyin Philly
Posted
I was extremely overweight before my dx of celiac... no matter what diet I had tried I wasn't able to lose any weight. After going gluten free, I have lost over 100 pounds in a little less than 3 years... So yeah, weight gain is def. a symptom and problem with some celiacs.

Sasha and Nini

I too have always been so overweight..there was a thread on this a while back.

since going gluten-free i've lost weight with not trying but once found 'lays p/chips..don't lose as fast.

I get so annoid that they don't have 'loss of weight or gaining of weight' guess they'd think all us 'fatties' would say, OH I WANT TESTED..WELL COULD HAVE SAVE THE INSURANCE COMPANIES ALOT OF $$ if my Drs would have KNOWN to look for it in the obese.

judy

jerseyangel Proficient
jerseyangel
Posted

I know--it seems like too many drs. still have 'the skinny kid with the big stomach' view of Celiac--and if you don't fit the profile, they won't go any farther with it. I was (and am) always about 20 lbs. over what I should weigh. Only in the months before my Dx, did I lose any weight due to the Celiac. By then, I was very ill and everything I ate went right through me. People shouldn't have to wait many years, until severe problems take hold, to get tested.

Judyin Philly Enthusiast
Judyin Philly
Posted

Yep, Patti-

It was my dr of 20 years who heard me ----when i went in and said--

"water 'D' for 5 weeks, can't eat anything, can't go out of the house, no control--would get in the garden and 'woops' AND GAINED 16#'s...he listened then and got the test done with out me asking cause i didn't think of celiac's because i was FAT.

JUDY

floridanative Community Regular
floridanative
Posted

Berneses - I'm late seeing this but CONGRATULATIONS! I know how weird it is to find out you have a disease and feel so excited but since it requires no chemo for treatment that's enough to get excited about right there! :D

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Guest BERNESES
Guest BERNESES
Posted

Thanks floridanative- yeah- gluten free is cake (no pun intended) compared to chemo.

As far as HLA DQ2 and DQ 8 go, this is my understanding. About 95% of people with Celiac's have the DQ2 gene and about 5% have the DQ8 gene. However, in people of European ancestry, about 35% of the population has one of these genes. So, if you have neither gene, Celiac's can be ruled out. If you have one of the genes, or both, Celiac's CANNOT be ruled out. the "gold standard" is still the biopsy BUT my doctor's take on it was that at the time I went gluten-free, I had all the "classic" symptoms, they improved on the diet and i have one of the genes. She felt it was enough to make a diagnosis.

But not everyone has the "classic" symptoms. Many people gain weight and doctors are just starting to realize that it has many faces (celiac's).

Rachel--24 Collaborator
Rachel--24
Posted
So, if you have neither gene, Celiac's can be ruled out.

Not having either of the 2 main genes can never rule out Celiac 100%. There is a small percentage of Celiacs who have neither DQ2 or DQ8. Both my GI and my new doctor have told me that they haven't yet identified all genes associated with Celiac so a negative gene test alone is not enough to rule out celiac disease.

momandgirls Enthusiast
momandgirls
Posted

Hi - I just found this site and your post. I'm also in MA. My daughter's in the process of being tested for Celiac Disease at Children's. I haven't been totally happy with our GI there and have heard good things about the Celiac Center at Beth Israel. It sounds like you were happy with Dr. Cheney. I'm thinking of getting a second opinion for my daughter - her antibody test was positive, her CeliaGene test was positive and her biopsy was "borderline." Do you know if Dr. Cheney sees children? Thank you so much!

Claire Collaborator
Claire
Posted

Rachel is absolutely right.

A have a new GI specialist - wrote about him in another thread. He was emphatic about this - saying that I do not have Celiac associated with the two primary identified genes - which does not mean that I do not have celiac. There are other genes not yet sufficiently studied so not yet available for testing. This is like the SCA genes that I was recently tested for. There are 26 of those and only 9 that they can actually test.

Also there is always the gluten sensitivity thing - a rabbit trail. My new doctor considers genetic gluten sensitivity to be celiac - though it is not currently recognized as such. I have not yet tested for that.

Endoscopy and colonoscopy scheduled for the end of this month. Even though I was negative on the Celiac gene test, he will be looking for evidence of celiac. Rather surprising for a GI to take that approach.

He thinks the negative blood work in the presence of symptoms is very iffy. Many local labs have little to no experience with celiac and really don't know how to process the sample adequately.

Claire

Guest nini
Guest nini
Posted
Hi - I just found this site and your post. I'm also in MA. My daughter's in the process of being tested for Celiac Disease at Children's. I haven't been totally happy with our GI there and have heard good things about the Celiac Center at Beth Israel. It sounds like you were happy with Dr. Cheney. I'm thinking of getting a second opinion for my daughter - her antibody test was positive, her CeliaGene test was positive and her biopsy was "borderline." Do you know if Dr. Cheney sees children? Thank you so much!

there is no such thing as a "borderline" biopsy. either there is damage or there is not. If they saw anything remotely looking like damage then that IS confirmation. With her antibody test being positive, she has Celiac period.

with the biopsy, they either didn't take enough samples OR her system is only in the beginning stages of the disease and she doesn't have complete flattening of the villi yet, BUT if there is ANY flattening at all or inflamation, This is Celiac.

Guest BERNESES
Guest BERNESES
Posted

That's right Rachel- I forgot about that part (that some people have neither gene). I'm still learning about the genetics aspect of all this. And there is no such thing as a "borderline" biopsy. And with the positive blood test and gene test it seems crazy that there is any question at all in your doctor's mind.

Claire- your doctor sounds awesome! I think that down the road (at least I hope!) that more doctors/researchers will start to realize that gluten intolerance and Celiac's are the same thing.

As far as Dr. Cheney goes- I'm REALLY happy with her. I'm pretty sure that she sees children as well. She also has an office in Lexington which is easier to get to than Boston for me. My guess is she'll take one look at those results and there won't be a question. I'd call her. I don't have the number handy, but I think it's listed on this site under recommended doctors. She did have a long waiting period (I waited six months). If that's the case, I wouldn't wait to have your daughter go gluten free. Just my opinion.

sasha1234 Newbie
sasha1234
Posted

thanks for all your imput, i appreciate all the info you've thrown my way... i'm sure i'll be talking to you all soon

sasha

  • 1 month later...
francelajoie Explorer
francelajoie
Posted
Just wanted to let those of you who were following my thread about seeing a Celiac specialist- Dr. Cheney at Beth Israel Hospital in Boston- that it was worth it! She called me today with my test results from Prometheus.....

I have one of the HLA DQ genes (I forget which one) and as she said, due to my "exquisite" sensitivity to gluten and having the gene, I have now been diagnosed as having Celiac's. She won't make me go through the gluten challenge and another endoscopy just for the sake of a biopsy because it would make me too sick.

Just 8 days short of being gluten-free for a year!

I'm leaving (right now) for 5 days but I'll elaborate when I get back. Sounds strange, but what a freakin' relief!

Hi Berneses,

Was all your testing covered by insurance? I was thinking of going to see her.

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