How Do I Deal With The Feelings?

[nutralady2001]

I guess I just want to vent more than anything else.

Here I am with finally a positive diagnosis of Celiac Disease.

My problems started in the late 1950's when I was 11-12. Started getting lots of diarrhoea

Then at 15 I got "eczema" Found some photos on the net this is close to what it looked like

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My parents took me to skin specialist after skin specialist and they didn't have an answer for it but am positive now it was DH

Then in the late '60's at around age 20-21 the diarrhoea got particularly bad, lots of blood and mucous (sorry if TMI) so was diagnosed with "mucous colitis"

Dr after dr over the years told me it was "IBS" nothing they could do, no suggestions of blood tests or endoscopies. My children have grown up with memories of me screaming in pain on the toilet have just talked to my son and asked if he remembers and he said "Oh yes!!" (he's 24)

12 months ago I changed doctors . I have blood tests done regularly as I have Hashimoto's Disease (auto-immune disease which kills off the thyroid gland) About 4 months ago they showed I was severely iron deficient, so had a bowel screening which showed blood in both upper and lower GI tract so from there had an endoscopy and colonoscopy

The endoscopy showed damaged villi and have just had blood tests come back with positive Anti-Gliadan antibodies, positive Endomysial antibodies and positive tTG IgA antibodies

I am so angry that I have suffered needlessly for so many years .

Does anyone know how long ago tests for Celiac Disease/ DH became available and how long before the feeling of wanting to track down every doctor I've seen and strangle them goes?

I'm kinda joking but also very very upset

[radiantrapunzel1]

I can relate to not having an answer. It has taken me almost three years of doctors telling me that since they couldn't find anything, it must all be in my head and that I just wanted pain meds. A nurse practitioner was the one who diagnosed me. I thank God everyday for her.

MY emotional problem is, I find myself falling into bouts of depression where I hate myself for being sick and putting a hardship on my family. I get angry and then sad when I think about not being able to eat a Fuddrucker's burger anymore.

What I'd like to know is, does anyone else have trouble with depression days and if so, how do you deal with it? I just feel myself getting more and more depressed and I don't like it. I mean, I'm finding all kinds of recipes, substitutions and whatnot, so i's not near as bad as I thought it would. I just need some fellow celiacs to talk to.

[tarnalberry]

The *AVERAGE* time for diagnosis in the US is 10 years. That means it takes a lot longer for some people - and you seem to definitely be on the tail end of the "long time to diagnosis" side of the distribution.

But does that make you feel any better? No.

Does knowing that the current blood tests having been around for around a decade, but not all of them, and they've been evolving make it any better? Not really.

Does it help to know that most doctors are horridly trained in the subject, getting - if they're lucking - a paragraph in a text book most of the time? Probably not.

It's fair to be angry. Realize that your current doctor - the one who *did* properly diagnose you - isn't a good person to be angry at. Really, there isn't a good *person* to be angry at. It's the whole system that doesn't make sure to include celiac disease as a differential on all of the symptoms you were diagnosed with that is the problem. It's the whole system that says to never look for a zebra; and once you think something is a zebra, it always must be a zebra. But that's also part of human nature.

It's fair to be angry, and fair to understand where it came from and honor that it's worth being angry over. But try not to let it stay with you for too long, or so strongly that it keeps you from other things. Because sometimes, as angry as we are with the past, we cannot change it.

I'm sorry it took this long, and I hope that you and your doctor can work together to get you as healthy as possible as quickly as possible.

[nutralady2001]

Thanks Tiffany....I know I'll be OK.......... it's the answer to 47 years of misery

They say in Australia only 1 in 10 people with Celiac Disease ever get diagnosed which is woeful statistics. My doctor wants my children to have antibodies testing done ( yes know tests can get false negatives)

Have an appointment Friday morning with some-one at the Celiac Society. When I joined I wrote up a page of my experiences they use information (anonymously) for future research and education

[lovegrov]

If you haven't already, please, please make sure your children get tested for celiac disease. They have a much higher chance, particularly the one with diabetes. All first-degree relatives should be tested.

richard

[nutralady2001]

Thanks Richard yes I will, I am even suspicious of my daughter's skin condition now wondering if it is DH and not lichen planus , we'll all be together over Christmas so will talk to them then

[Offthegrid]

I really feel for you. All those years. All those stupid doctors who should have looked for something, or had you try an elimination diet, etc.

We like to think our doctors know everything.

But I'm so glad you know now.

I'm relatively lucky, in that it only took me 6 months and a change in doctors to get my diagnosis. But I'm sure that's only because I mentioned to my new doctor that my aunt cannot eat gluten and maybe I have that, too. (But I had digestive problems for probably 10 years before I even mentioned it to a doctor, and only when it got so bad I believed I had food poisoning.)

[darlindeb25]

Yesterday at work, a patient and I were talking about the Edible Bouquet a patient had brought the staff as a Christmas gift. She had asked me if the chocolate covered oranges were good and I had said, "I don't know, I can't try them." She says, "Are you gluten-free?" I looked at her and said, "Yes, I have celiac disease, do you?" and that is when she said that her father does. At that point she told me who her father is and I know who he is, her parents are patients too and I have talked with her mom before. The daughter is a Type 1 diabetic and no one has told her that she should be tested for celiac disease since she is diabetic and her father is celiac. She was so surprised when I told her that diabetes and celiac go hand in hand. She even has symptoms. The shock of realization on her face made me feel so bad. Yet, I am glad she knows now. She needs to be checked out.

[loco-ladi]

I dont blame the doctors back then as much as I do the newer ones.......

assume you are a student of medicine in the late 1940's, you hear a 5 minutes blip about celiac and its REALLY rare you most likely will never see a case in your life.......

1950's they hear the same thing....

1960's ......... yup same thing

1970's ... begining to sound like a borken reconrd aint it!

1980's oh some improvement... now they are told they will most likely only see 1 patient in their career...

1990's hmmmmm maybe the lucky ones and specialists will see 5 in their careers.........

now here we are in 2000 and now they are being told maybe its not so rare after all and are spending a whopping hour explaining it..........

how long did I take US to figure it out? heck of a lot longer than an hour I'm betting!

So, who's to blame the doctor listening to their teacher or the professor not smart enough to realize its alot more common!

[nutralady2001]

Yes I certainly understand the docs of the '50's and '60's not figuring it out. My poor parents took me to skin specialist after skin specialist in the 1960's trying to figure out this terrible "eczema" of mine. I had my whole hands bandaged up in gauze bandages where it was worse and my Mum had to bath me (at age 16) that how covered I was

Of course now I see photos on the net I know I had DH and once I had the "IBS" diagnosis each doc was happy to run with it and not investigate further

The gastroenterologist who I was referred to and who ordered the scopes, when I explained everything /symptoms especially the blood and mucous (sorry if TMI) to him said "That is not Irritable Bowel Syndrome"

[sneezydiva]

I'm also very angry with the doctors. I tested negative for celiac, but positive for a wheat allergy. Food allergies have been much more well-known than celiac, and it still took strong arming an allergist to do the test. No one would do it on their own accord. After countless allergy shots for pollen, a sinus surgery, consults with rheumatologists, and gastroenterologists and being told that I was on maximum allergy therapy and I was just a whiner, my symptoms could not be as bad as I described, and that my recent digestive ailments meant I now had developed IBS and it wasn't related at all to my allergies! Hmmmm then why did both calm down just three days on the diet?!

Doctors can only treat what they learn and know. I actually can forgive the unfortunately ignorant doctors who truly cared, and did all they could to help me, and always believed me, and took me seriously. If I hadn't moved, I think my old doctor would've eventually figured it out a few years ago. But it is the ones who didn't know, and were too proud to admit that they didn't know, and tried to put me on psych meds and label me a hypochondriac that I can't forgive.

[shan]

My stepgrandma was diagnosed just over thirty years ago in england. In those days instead of looking at the villi to see how damaged it was, they looked at the tongue. If it was very smooth like a piece of paper, they diagnosed you with celiac. Now, i asked my grandfather about this (he's a dr) and he said just like the insides need sonething to grab the food (i.e. the villi) the tongue has approx the same thing. I didn't quite believe him, thought he was a bit old fashioned, but the next time my 2 year old accidently ate gluten i looked at her tongue, and it had gone smooth around the edges. And then to make sure, i checked her tongue a few days later, to see if it was my imagination, and her tongue was back to normal!! I guess my grandpa knew what he was talking about!