Gold Standard Vs. Feeling Human

[dearhearts]

Hi. So... after years of unexplained anaemia and nutritional deficiencies like b12, folate and vit d my dr decided to ask the lab to do a coeliac screen on my blood test last week.

 

These were the results:

 

TTG IgA Ab     > 300     (< 15)

Deaminated Gliadin Peptide IgG     185    (< 20)

IgA 3.0 (.8-4.0)

Endomysial Antibodies    Positive

 

 

I understand all the reasons to have a biopsy and to stay on a gluten diet until the biopsy can be done BUT I have been so sick for so long and the past few months it seems to be getting worse. I just spoke to someone with the same dr who said they have been waiting 3 months to get in for a biopsy, although this person had negative blood tests so it is possible that I might get in sooner, but still.... this whole celiac diagnosis thing is very frustrating right?

 

Has anyone had similar test results and had a negative biopsy?

 

From what I have read in the past few days it seems like the damage takes a long time to heal, so if I were to theoretically start a gluten free diet before my appointment and it took two months to get it, wouldn't the damage still be visible if it does indeed exist?
 

 

[1desperateladysaved]

I hope you get some definitive answers SOON!   So glad someone thought of testing you for this.  I hope you will be gluten free and healing soon.

 

D

[w8in4dave]

I think they just want to see the damage, and later do other biopsy's to see if your healing. Probably pretty important seems you have had this for so long. Healing Vibes your way. 

[Adalaide]

I would find out how long it will take you go get in before you make any decisions. Do some homework. Research GIs who accept your insurance in your area who are well versed in celiac. Contact them about waiting times and such. Go in to your next appointment armed with this information and tell your doctor you know who you want to be referred to. This can help shorten your waiting time and make sure you see someone who isn't a complete moron as well.

[Cara in Boston]

It is pretty clear from your blood test that you have celiac disease.  Your doctor could just diagnose you based on that alone - or that and your (hopefully) positive response to the diet.

 

If not, is there a reason you need an "official" diagnosis?

 

I wanted to be very, very certain when my son was being diagnosed because he was only 5 at the time and I figured we would need documentation for things like schools, camps, college dorms, maybe military service, who knows?  He has a long, long time to be gluten free.

 

As for my own diagnosis, I had all the symptoms and my blood tests were positive.  My biopsy was negative (which really doesn't rule it out) but that just added to the confusion.  Damage wasn't found, but that didn't mean I don't have celiac.  All my symptoms went away as soon as I stopped eating gluten.  It has been over two years and I'm feeling great.  As an adult, I don't really need "permission" from a doctor to eat gluten free so it didn't really matter.

 

My "official" diagnosis is gluten intolerant.

 

Cara

[notme]

ugh - sorry you are going through this   my bloodwork was negative but the doc could see damage when they did the scope and i never went back on gluten for either test.  i was too underweight and improving noticeably on the gluten free diet.  i was also misdiagnosed/undiagnosed for 25 years, so i guess there was enough damage and no doubt.  i feel for you, but if you need to have a solid diagnosis (no advantage in the u.s. - you can deduct the difference in price of food, but it is hardly worth it!) then i guess you need to follow dr's orders.  but if your blood test is positive, you can pretty much bank on it.  false negatives are common, false positives are not.  if all they are doing is a baseline to track your future improvements, i would quit the gluten.  talk to your doctor.  good luck & i hate this for you

[ImaMiriam]

It's sort of different for adults, I believe, but I'm going to tell you a little about my 11-yr-old daughter. She was diagnosed with a low positive blood test in late April this year....we took her off gluten immediately. (Of course, I'm still figuring out about gluten in some foods!!! For the most part, she is on a gluten-free diet -- we find it difficult to avoid cross-contamination in processed foods)

 

At any rate, we have NOT done a biopsy. She's 15 lbs underweight. I feel that we already know that she has Celiac. She (and I) both have one of the Celiac genes.

 

I believe we have to trust ourselves and our understanding of our own bodies. Since she stopped eating gluten, the transformation in my daughter is tangible. My mom, husband, and I all see huge improvement in her health and her behavior, even though she is still getting stomach aches (from gluten).

 

My current hope is to start working with a new nutritionist, someone who was recommended to us by the GI doc. Our current nutritionist is not well-versed in children or Celiac. We need someone who can help us with the Celiac and with the need to gain weight. I'm waiting for approval from insurance company.

 

I think that a good nutritionist is vital for Celiacs, and that our medical community needs to come up with a more humane "gold standard" for confirming Celiac. That's my 2 cents' worth, and I'm very opinionated on this! I hope I don't offend anyone.

Did you have a genetic blood test?

[notme]

i agree, miriam - testing is muddy at best   and cara, yes, a positive response to the gluten free diet is one of the diagnostic tools in determining celiac. 

[dearhearts]

Thanks for the responses. I have not had genetic testing done, only the tests I posted as well as a bunch of other tests that only showed the nutritional deficiencies for example my Ferritin was <6 -- (20 - 190). Everything else was normal, thyroid, diabetes screening, liver, kidney, etc. The only thing I think was a little off outside of the nutritional deficiencies and Haemoglobin was the cortisol but was still in normal range 619 (200 - 700).

 

I think you're right Cara, it's probably not terribly important to have a biopsy for diagnosis and I think the only reason I would be waiting for it is because I've been so run down for so long I don't even like to tell people most of the time when I feel unwell because I'm sure they think I'm a hypochondriac. I imagine I'm not the first person to want a solid diagnosis for the sake of other people taking them seriously. But I'm beginning to feel that if it's possible that a change in diet will make me feel like a capable human then I can't really justify not doing anything about it for the sake of authenticity or a government subsidy.

I have two young kids and I struggle every day with keeping on top of things. I've had both of my kids tested for celiac and was certain I'd found an answer after my test results came in for why my 4y/o is underweight, wakes up screaming in pain every night and has diarrhoea multiple times a day for starters. No allergy tests for either of them have ever come back with a positive and faeces tests always come back normal as well. I haven't seen the celiac screen results for the kids yet but spoke to a nurse who said they both came back within normal and the lab had noted 'celiac disease unlikely'. I didn't want them to have it, I just wanted an answer, and a way to fix the issues he has been dealing with since he was born and now I'm back to lost again. 

[Kassia]

To me, this is the key point. After my blood test, I told my doctor I wanted the endoscopy to be certain, I wanted to know, all that. I had that procedure the day before Thanksgiving. And, from a gluten perspective, I partied on Thanksgiving. I eliminated all gluten the next day. My life changed. And my doctor -- hard to reach on the best of days -- never called with the results of my test. This told me the endoscopy didn't reveal whatever I thought I needed. When I finally saw my doctor, he pointed to my blood test, noted the challenges of the endoscopy, and focused on my positive (or, well, amazing!) turnaround since eliminating gluten.

 

There was, apparently, one more very expensive blood test. At that point, I knew my answer, so, contrary to what I'd told him before, I told him I was fine. And I am. Accidental gluten encounters since that day have assured me I'm not crazy, and, well, like so many others, I don't need to be labeled celiac to know I can't ingest gluten. Ever.

 

 I imagine I'm not the first person to want a solid diagnosis for the sake of other people taking them seriously. But I'm beginning to feel that if it's possible that a change in diet will make me feel like a capable human then I can't really justify not doing anything about it for the sake of authenticity or a government subsidy.