Other Related Diseases / Misdiagnosis

[Guest cowboy]

Hello all -

I am just glad I found this site. This is my situation.... my wife has not yet been diagnosed with Celiac Sprue, but she is showing all the signs for it and we are just waiting for a biopsy to take place. Since the age of 6 my wife has been diagnosed with, and treated for Crohn's disease. Well after several years of fighting Crohn's and not getting too far, she elected for surgery. After surgery, we both were excited because now her life was going to get back to normal and she was going to start feeling better. The only problem was, something was still not right. Then, upon another doctor appointment, and more blood work, the doctors were still puzzled. Then, my wife happened to mention a certain sympton (dryness inside her nose) and a light went on with the doctor. She immediately thought of Celiac Sprue and is having my wife checked for it. She will be having a biopsy in the upcoming months. Now we are not sure if my wife does have it, but we are starting to prepare for it. (Hence me finding this website)

For starters, has anyone else had this situation of a misdiagnosis for so long?

Why is this disease not commonly checked for?

And third, I have heard that this disease could be a cause of Crohn's?? Is that right?

Needless to say I am in need of more information, and will continue to research as much as I can. I know very little other than a change in diet can solve it.

Other than answers to my above questions, I am not sure what I am looking for. If you have any similar situations, or know of someone else who was also diagnosed with Crohn's I would be glad to hear about it. I must also mention that it is not fair for me to say my wife was misdiagnosed with Crohn's. She did have Crohn's, it is just that I have a feeling that maybe if she was properly diagnosed at age 6, then the Crohn's may or may not have ever shown up.

Thanks and I will keep researching. I have a very small knowledge on the subject so far.

[Guest barbara3675]

Dryness inside the nose? Is that a symptom of gluten intolerance? How interesting, I have had that for some time now and could never understand why. My DDIL suggested that I be tested for gluten intolerance as her daughter/my granddaughter has celiac disease and I have these conditions: migraines, a chemical depression, fibromyalgia/pain. Sure enough, I have a gluten and casein intolerance after being diagnosed through Enterolab (who I recommend highly). It will be interesting to see if the dryness inside my nose goes away now that I am eating gluten-free/cf!!!!!

I hope that you keep with your quest to find out if your wife needs to be on a gluten-free diet. It really isn't all that bad...however adding the cf thing in there really puts a crimp in things. Eating out is harder, at home the gluten-free thing is a snap. Many people are diagnosed with IBS and Chron's and really have celiac disease. Best wishes to you, be sure to stay with this board, I have learned so very much, including how to get properly tested through Enterolab. I will be ETERNALLY grateful for that.

Barbara

[tarnalberry]

While I wasn't so sick nor experienced misdiagnoses, the _average_ length of time before a diagnosis is made in the US is 10 years. Part of the reason is that doctors don't look for it because they were taught that it's very rare, that it's a children's disease, and that you've got to be thin as a rail, having constant diahhreah, and nutritionally deficient to have it. Why are they taught that? You'd have to ask the medical schools...

Good luck to your wife with the biopsy (don't forget she needs to continue eating plenty of gluten before the test), and the diet - while a big adjustment in some areas - really isn't too hard once you get used to it, even if it can take a while to get used to it. :-)

[amiller1030]

I am intersted in knowing what more you have found out Cowboy! My brother in law was diagnosed with Crohns and had surgery about 4 years ago. He still has problems. The only thing he lives on is chicken, noodles, gravy and bread! It all makes sense now. My husband has started having signs of Celiacs. He has been tested for Crohns and it came back negative. Hope your wife is doing better!!