How Were You Diagnosed?

[Guest BellyTimber]

I am really angry because he won't test me or give me a diagnosis of Gluten Intolerance so that I could write off the cost of food! I have or had so many of the symtoms of Celiac that I can't believe I don't have it.

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I am also disoriented and griefstruck because when I had weeks of acute abdominal pain (end 2002) I wasn't sent for a biopsy and hadn't had most of the right blood tests done earlier. That means I can't have bread mixes, biscuits etc on prescription and my chermist is handy but the shops with the best ingredients are out of the way from sensible public transport for me.

I met the local gastroenterologist who I should have been sent to, at a support group meeting and he says this happens a lot and he thinks my GP should formalise the diagnosis and let me have the prescriptions. I didn't ask him whether he would put that in writing.

I discovered this site in March this year and if I knew in 2002 what I know now I'd have insisted they follow their own rules.

It is estimated that the amount of people in the UK who should have the celiac disease diagnosis is ten times the number who have actually been given it.

[Guest BellyTimber]

He said that the biopsy was no longer the gold standard of diagnosis and the fact that I responded amazingly well to the gluten-free diet was confirmation of the dx.

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This is a most extraordinary statement. I would welcome it made more often but I fear I hope in vain.

My communicating and relaxation have improved but otherwise am still rather under the weather after 3 years.

[Firegirl43]

Very positive bloodwork and biopsy

[Guest BellyTimber]

So I don't have a friggin' clue if I have celiac disease or not now. Am seeing a GI, going to do an endoscopy in 2 weeks - although since I have been gluten-free for 6 months, a normal biposy won't mean anything yeah or nay. If that is indeed the case I see a gluten challenge in my future.

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The uninformative approach of so many doctors never ceases to appal me.

Our diagnoses such as they are are precious.

We are truly the privileged few.

[skbird]

Dietary challenge, as suggested by my GP, and then I did Enterolab on my own, which was sort of inconclusive but was one point away from being positive, done 5 months after gluten-free and two years of low gluten eating. Diet for me is everything. And at this point, I don't care if I don't have an official diagnosis - I now tell all my new docs that I have autoimmune gluten intolerance and they write it down in my file. Good enough for me.

Stephanie

[julie5914]

Highly positive bloodwork from a research project I volunteered for for IBS. Got $250 out of and AND a celiac diagnosis after they mailed me the results. I never had endoscopy because the blood results were so high. 4 months gluten-free and I still have some symptoms. I the IGG and IGA were 60 and 106. I can't remember which was which, but they were both suppsoed to be under 25. The EMA was positive - normal is 1:4 and I was 1:1240.

They can do a biopsy on me now if they want, but if they want me to go back on gluten, they'll have to shove it down my throat.

[FaithInScienceToo]

4 years ago, I saw an Internal Medicine MD who specialized in Nutritional treatments. When he heard that I had been diagnosed as "Fibromyalgic," he told me 'no gluten,' among other things, and tried to sell me very expensive 'weird' homeopathic things...

I thought he was a crook, or a severe health nut...unlike me, a normal health nut, just trying to get help, and not robbed...

So. I ignored the no-gluten thing and just tried to eat healthier...and he never mentioned blood testing!

3 years later and more dibilitated and desparate than ever to find out what was 'wrong' with me, I went on-line and researched 'gluten,' only to find to my GREAT RELIEF that gluten was related to ALL of my past and present diagnoses/health problems...

I also found this site then, and others...I put myself on a gluten-free diet, as I didn't think I would ever want a biopsy done anyway...and I wanted to stop gluten ASAP if it was harming me....I felt better quickly...

6 weeks later, I saw a GI - NOT for Celiac, but for an external hemorrhoid, and I told him about my self-diagnosis...

He said 6 weeks gluten-free was not too late to test me...So, he tested me and I came out 29 (30+ is positive for Celiac Disease) on the antibody test...

He still wanted to do a biopsy, and I decided to do it, along with a colonoscopy with biopsies there, too, as he wanted to be sure it was 'only Celiac Disease'...He found 'no current damage,' but told me I was being diagnosed "Celiac Sprue" due to all of the others test results and my positive dietary challenge...

He also told me to get my family to get tested...I have tried...To date, only my mom has been tested, even though I told my parents that my gene (DQ8) most likely came from my Dad ...

See my signature for more details -

Thanks for asking

Gina

[floridanative]

[Colonoscopy showed extensive collagenous colitis.

Karen - what does that last thing mean? My colonoscopy next week and I thought that could not show me any signs of Celiac disease. Now I'm really confused.

Tiffany M.

[NepalFreak]

I was diagnosed from biopsy... no such thing as a blood work test back then when I was 18 months old.

Strange thing, my twin does not have Celiac but my younger brother does. He was diagnosed by blood work, wow, 3 years ago now!

Parents don't have.

[SharonF]

I had diarrhea for, oh, 3 months, so I went to the doctor, got a blood test, which showed elevated something (tTg, I think), so they did the colonoscopy and found the damaged villi.

[KaitiUSA]

[Colonoscopy showed extensive collagenous colitis.

Karen - what does that last thing mean? My colonoscopy next week and I thought that could not show me any signs of Celiac disease. Now I'm really confused.

Tiffany M.

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Colitis is another condition separate from celiac. Colonoscopies can't detect celiac because celiac affects the small intestine. Colonoscopies are used to detect other things.

[quaggo]

I would like to see how many of you got your diagnoses. Was it by bloodwork and symptoms or did all of you confirm it by biopsy. Or did some of you just do the diet to see if it helped.

My older son was diagnosed by bloodwork, symptoms and ulcerated intestine. My younger boys were diagnosed by symptoms and bloodwork.

My sister and her children have some symptoms but there bloodwork came back normal. She is going to try thr diet anyway.

I'm just curious.

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I was just diagnosed with celiac disease today. It started out as acid reflux problems which, once nexium didnt resolve the issue, turned into an upper scope. They did bloodwork also along with my biopsy. The interesting thing is that my blood work came back NEGATIVE however the biopsy and upper scope show I do have celiac disease. My doctor says the bloodwork is not 100% accurate and we should trust the biopsy and upper scope results first.

So now im' starting the gluten free diet and getting more bloodwork done to check my nutrient levels I believe...and then after a year of the diet the Dr. wants to do another upper scope and biopsy to see if it's helping. If not, he says I will need to get a colonoscopy done next...

[quaggo]

I even had a rash on my elbows which is hallmark DH.

Skar.

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I am curious what the rashes look like. I have had a light brownish, kind of dry or scaly patches on my skin in the past. I was just recently diagonosed with celiac disease. Also it seems that I may possibly have this rash on my scalp and back of my neck as well. It's almost like my skin is turning brown and bumpy, but it does not itch. I also had this "rash" on my stomach when I was younger but now it's just on my scalp.

[debmidge]

As hubby is a computer-phobe I am replying:

He was misdiagnosed for 27+ years; went thru several gastros who all said IBS, one medical group was a large, prestigious medical group here in Union County North Jersey who will remain nameless.

During the 27 years he ate whole grain wheat/oat/barley/rye products as per doctor's orders for the IBS diagnosis that was incorrect.

Suffered through years of ill health, depression, severe weight loss, diarrhea, gas/bloating, etc. and finally in Fall of 2003 his body was ready to collapse and he should have been hospitalized, but a NEW gastro here in our home town who was trained in India and London put him on the right track. Blood test showed "strong positive." He went gluten free ASAP, got relief in about 4 weeks and than waited almost a year to get biopsy when all was better (he was too sick to even get a biopsy during Fall of 2003 diagnosis).

Anyway, unfortunately due to not eating gluten for several months, biopsy didn't show any damage except for an ulcer and esophigitis, and hiatal hernia (ulcer was in last stage of healing). So biopsy was negative for celiac, but he refuses to eat gluten just to do a stupid test when he KNOWS he has celiac disease because his body is feeling better than it has in years and all other symptoms are gone or are minor at this point.

Except for the beginning of this diet when we made mistakes, he has been eating gluten-free for almost 2 years now. He will never knowingly eat gluten. If it's a cross contamination mistake, well that's another thing; but now that rarely happens.

[krisb]

As hubby is a computer-phobe I am replying:

He was misdiagnosed for 27+ years; went thru several gastros who all said IBS, one medical group was a large, prestigious medical group here in Union County North Jersey who will remain nameless. ]

Can you email me directly and tell me who you used and who you use now. I live in Sussex. krisbdave@yahoo.com