Is There A Reason To Get A Diagnosis?

[Pisqualie]

Hi there!!

I am about 99% I have a gluten problem - Celiac or just intolerance, I'm not sure ... but there is something going on. I'm looking for some guidance on testing...

I had a blood test when I went to visit an internist and that came back totally normal. They did thyroid testing, a celiac panel and I think a regular blood count. I had already been off wheat for almost 2 mths at this point and she thought that it would come back normal given the diet. I had previously visited a GI dr who wouldn't make any speculations until he did an endoscopy and colonoscopy. So I guess that would be my next move. It will cost me $150 out of pocket, require my husband to take a day off work (difficult for him, but he is willing) and my children to travel with us at 6 a.m. to head 1.5 hours out of town. We live in the boonies. So ... it's just really inconvenient. But... if there is reason, of course we will do that.

So I ask... is it worth it, you think? Are there any benefits to knowing other than peace of mind? I am concerned about the health of my digestive tract and I do have considerable pain. Has anyone ever sworn they had Celiac and then had an endo/colonoscopy turn out totally normal? I would hate to go through all that just for it to be normal!!

Thanks so much!

[Krussell21]

It is 100% worth finding out! If you do have Celiac Disease you need to know how damaged your intestines may be. The disease is also linked to other health issues. My doctor insisted I put gluten back into my diet before doing the blood test and the scope so the test would not come back as a false negative, and that way we would know for sure. I am 34 and was just recently diagnosed. I had many health problems that this contributed to such as, my gall bladder quit functioning and had to be removed....they though all would be better, but my problems continued, I then went into the hospital for a week where the scope was finally done and they found I had a syndrome called Superior Mescenteric Artery Syndrome. IT is a very rare disease and it's missed a lot....1 out of 3 people diagnosed die due to doctors not finding it in time. I was told mine was 2 degrees away from killing me. I ended up having to have a horrible surgery and staying in the hospital for 3 more weeks. The recovery was brutal and I now have a scar that starts from my sternum and ends at my belly button. Not so pretty for me during the summer, but I am now ok with it. During the scope when this syndrome was found they noticed the damage to my intestines and did a biopsy. I was finally diagnosed with Celiac Disease, and was told by my doctors that it is pretty likely the reason for all the other problems, including the gall bladder and the syndrome issues I had succumbed. With such a late diagnosis I have to be very careful, and it is pretty scary for me. So yes....it is worth finding out!

[GF Lover]

Hi there, I believe getting a Celiac dx is a personal decision. It was suggested to me by my rheumatologist that I try the diet. It worked and that's all the confirmation we need.

Also if you decide to get dxed, you still need to have followup for other health issues you have or might have in the future. Some issues come up as being connected to celiac, but not all. Still need to followup with your docs and not assume all will resolve going gluten free. Even when an issue does resolve, there may be damage already done so you still need treatment for it. Other issues may come up that you might think are celiac related but are not. You need to be diligent about your health and don't get caught in the "could be" catchall for celiac.

Here's a great example. I was having arm wrist and finger weakness, tingling and some Numbness in thumb and some fingers. Had a test and...shocker here, carpel tunnel brought on by hypothyroidism as I don't work and have been on disability for some time.

I could have chalked the symptoms up to withdrawl, being glutend or just a maifistation of celiac. Dots continue connecting but some still need their own resolution whether connected or no. Good luck. Be well

[beebs]

I always think its best to if you can, what if it isn't that? What if it is that and something else? What if the years of eating gluten has done damage etc?

[beachbirdie]

  On 5/19/2012 at 9:21 PM, Pisqualie said:

Hi there!!

I am about 99% I have a gluten problem - Celiac or just intolerance, I'm not sure ... but there is something going on. I'm looking for some guidance on testing...

I had a blood test when I went to visit an internist and that came back totally normal. They did thyroid testing, a celiac panel and I think a regular blood count. I had already been off wheat for almost 2 mths at this point and she thought that it would come back normal given the diet. I had previously visited a GI dr who wouldn't make any speculations until he did an endoscopy and colonoscopy. So I guess that would be my next move. It will cost me $150 out of pocket, require my husband to take a day off work (difficult for him, but he is willing) and my children to travel with us at 6 a.m. to head 1.5 hours out of town. We live in the boonies. So ... it's just really inconvenient. But... if there is reason, of course we will do that.

So I ask... is it worth it, you think? Are there any benefits to knowing other than peace of mind? I am concerned about the health of my digestive tract and I do have considerable pain. Has anyone ever sworn they had Celiac and then had an endo/colonoscopy turn out totally normal? I would hate to go through all that just for it to be normal!!

Thanks so much!

If you really need a diagnosis for some reason then go for the testing.

If you plan to go for testing, you will need to be back on a gluten-containing diet for several weeks to several months. Damage can be spotty, and if you have been eating gluten-free, you have likely started to heal and they might miss any damage.

How are you feeling now, off of gluten? Have your symptoms resolved?

[Pisqualie]

  On 5/20/2012 at 5:34 AM, beachbirdie said:

If you really need a diagnosis for some reason then go for the testing.

If you plan to go for testing, you will need to be back on a gluten-containing diet for several weeks to several months. Damage can be spotty, and if you have been eating gluten-free, you have likely started to heal and they might miss any damage.

How are you feeling now, off of gluten? Have your symptoms resolved?

Thanks all, for the input and insight.

I don't even know anymore. I feel like I can't pinpoint things. When I went off gluten originally, it was noticeable immediately when I consumed even a trace of wheat/gluten. It was very obviously what was going on. Then I went to Europe for two weeks... ate regularly and while bloated and constipated, really didn't have any pain persay. I came back and now I cannot seem to pinpoint things. I had toast yesterday morning along with a scrambled egg. Discomfort, but was ok. Four hours later, tuna fish for lunch (no bread - just out of a bowl with celery, pickles, mayo, onions) and an hour later was rushing to the bathroom - it was that heaving, cramping, painful OMG sort of thing. Was ok. I assumed it was the bread that had finally made its way through and thought ah-ha, it IS still wheat! Then had the rest of the tuna for dinner - again, no bread ... and an hour later, sicker than the first time, twice. After that third miserable time, it seemed to be out of my system and I was fine.

Now I am eating just regular to try and figure myself out. I will tell you there is a distinct connection between stress and my digestive system. I don't know what to think anymore.

It's not as obviously gluten/wheat as it was before I went to Europe. It's not not connected... but it's not as immediate as it was before. Not sure what to think!!

Thanks! I'm feeling irritated by the whole mystery and going to doctors and stuff.

[Lisa]

It's no doubt that you were negative on testing after being gluten free for two months.

Many people here are self-diagnosed and they feel quite comfortable with that choice.