Do I have to be diagnosed?

[skbird]

I believe I am gluten-intolerant, not sure I have CD. I cut gluten from my diet about 2 months ago and have been feeling much better. I asked my doctor if I could/should be tested and did I have to start eating gluten again for the test but he told me the diagnosis for CD/GI is a gluten-free diet for 6 months, then evaluate health issues. Hmmm.

Anyway, aside from feeling better, is there any real reason I *have* to be officially diagnosed?

Thanks!

[aklap]

Hi Skbird,

Your Doc is correct...you must resume eating gluten in order for the tests to be accurate. Wow - I'm actually impressed your Doc knew THAT much!!

Usually they start with a set of blood tests called a Celiac Panel that should consist of these tests:

A complete Celiac Blood Panel:

antigliadin IgA and IgG (May indicate Non Celiac Gluten Sensitivity)
anti-tTG and/or anti-endomysial (Looks for villi damage)
total serum IgA (rules out IgA deficiency)
anti-reticulin IgA (Rarely used but, a very thorough doctor will include this)

More on Diagnostic Testing

If the blood test come back positive, they may want to scope you to check for intestinal damage (the gold standard for Celiac diagnosis).

Doing a gluten challenge (eating gluten to be tested) is really a personal choice. Do you risk further damage to your body only to find out something you already know?? I happen to be one of the many that do not have an offical dx (dx is abbrev. for diagnosis). I've had the scopes - no intestinal damage. I've had the some of the blood tests (a doc ordered them unbeknownst to me) - they were negative because I had been GF for almost a year. But in the beginning, I started a gluten challenge (because I thought it was "all in my head"), but only lasted 5 days before I had to quit.

I don't think there is a REAL reason to be officially diagnosed. It kind of depends on the person you are. I'm kind of a black & white kind of guy (or is should say on or off since I work in computers...hehehe), so it took me awhile mentally to deal with the concept of not having a piece of paper that says "Hey goofball, you know you can't have gluten, but I'll tell you again". Some people/Doctors will tell you...the real dx is how you feel...not some piece of paper. (I would happen to be one of them, because I am living it).

People put themselves on all sorts of different diets for all sorts of different reasons...

There, you now have my 2 cents...for what it's worth.

Good luck in whatever you decide to do!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[skbird]

Actually, what my doctor said was to go GF and then by how I felt was the diagnosis. Not to eat gluten to get the accurate test - which was the concern I had, that I was not going to have an accurate test in 6 months or whenever as I was eating GF.

I can say that since going GF, any time I have any small amount I have stomach distress, migraines, foggy thinking (gosh, I thought that was just me, didn't know it was a symptom! LOL) and - weird one, no one else seems to have this - a really itchy sensation around my collar bone. I have to start scratching and then my neck gets all red and irritated, but no obvious rash.

Because of other food intolerances I have already given up a ton of foods - most are ok with the GF diet but I can't eat potatoes which is a bummer as so many prepared GF foods include them. As our kitchen isi being remodelled, I have been living on Annie's Rice Pasta Mac & CHeese. Seriously, almost one a day. Pretty weird for someone who is also hypoglycemic, though that has gotten a lot better since going GF. It is all connected, it seems...

Anyway, there's not test to prove that I can't eat nightshades (potatoes, tomatoes, peppers, eggplant, etc) but I know I have a toxic illness that is very severe if I do so maybe I don't need a test for GI either. In fact, what happens to me with nightshades seems a lot like the description of what happens with CD, and the longer I go without them (5 years now) the more I react to the smallest amount, like paprika for coloring in foods. My career as a protestor is over as I am terrified by the thought of pepper spray, I wouldn't be surprised if it would be enough to kill me....

[aklap]

Brain fog was a big problem for me. There were days that I had a hard time functioning Come to think about it...my collar bone would itch too...

Yes nighshades can cause problems too

Good luck in your journey!!!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[skbird]

When people say "Gee, I can't take you anywhere" about me, they really mean it!

I can't remember if it was a post you wrote or someone else but when you already have several other things you can't eat, honestly adding a few more is no biggie. There are so many other things to eat that are so delicious, it's fine by me.

I guess if there's no reason I *have* to have an official diagnosis (I'm getting used to that with everything else anyway) then I won't worry about it. I've read that the problem is that people are nutritionally short-changing themselves if they start cutting food families but I research everything and think I have a very healthy diet so shouldn't be a problem.

Thanks for your informative post!

Stephanie

[aklap]

Hi Stephanie,

I get..."Poor Al...Is there anything that you CAN eat?...I don't know how you do it!...Poor Al...I could never do that...". My wife's family does that at every function. I really don't have a problem with it. I have to tell people...there are more things that I can eat than that I can't. I just have to look a little bit to find them. I may have a problem giving up dairy tho (I'm experimenting with that right now for my peripheral neuropathy). Cheese will be the hardest!!!!!!

Yup - like you said - you get used to it. Hey it beats the alternative - feeling hung over and in a spaced out stupor is no way to go thru life !!!

Watching your nutritional intake is important. I know I should be taking a multi vitamin, but I haven't yet. Since I've found more things (ie GF junk food) I can eat...my eating habits have slipped a back a bit. I need to up my veggie intake to where it was when I first started all this madness

Your welcome! I try to help. I struggled to find answers...now that I have some of them...I hope I can help others so they won't have to suffer any longer than they already have. Some of the reports I've seen said average diagnosis time is 11 years. YEOW!!! I thought 1.5 years was bad enough!!!

I'm sure others will chime in on the diagnosis thing. There may be some very valid medical reasons to have an offical diagnosis. I just haven't ran into them yet.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[skbird]

Your story sounds just like mine! I can't take it getting all the pity looks. I usually back out of dinners, weddings, etc, because it's just too annoying. Oh, and free lunch at work is almost always Mexican food, that's just ridiculous. "Oh, you can eat just a little, oh, I don't think there's pepper in this, just try it, oh, it must be so hard for you - I could not live if I couldn't eat tomatoes/bread/cookies!" I think it's pretty funny most of the time - this Christmas was the FIRST year where I didn't feel all sad I couldn't eat the cookies people brought in (still bringing in) every day.

My heart goes out to you about the dairy issue... seriously. I saw a natural healer several months back who told me to get rid of dairy. Saddest day of my life. I actually cried right in front of him, right in the middle of the health food store. I love those really stinky, rindy French cheeses. LOVE THEM! So I went a month without. I found life actually got crankier for me, not better. At the end of the month, and after reading numerous articles that only Northern European adults seem to be genuinely able to digest dairy into adulthood (I'm 75% Dutch, 25% Scottish) that I decided to go for it and it was like I'd found some magic cure, I actually felt happier than I had in weeks. So I think dairy is actually one of the few foods I don't have problems with, oddly enough. Though I try to keep it to a minimum and not squander it by eating lots of cheese/milk/etc all the time. As a friend of mine had written in college, "Life's too short to eat generic cheese." I stick by that.

Take care

Stephanie