Flowerhouse1952

[flowerhouse1952]

My husband passed away in 2012 of Wegener's Granulomatosis. He evidently had it for quite some time but was not diagnosed with it very quickly as he had so many symptoms. He also had Celiac disease and am wondering if the two can be related? I have so many questions about this disease.....so few answers........so very frustrating to cope with this loss. We had just celebrated our 42nd wedding anniversary when he passed on. He had never been out of the US.....most of our married life he had suffered from ear infections, sinus infections. Seems like he would get his meds finished up and back they would come......He stuck with his GF diet most of the time, but then I found he was cheating with pizza from the store. I found evidence after he passed on. Has anyone suffered from Celiac along with the Wegener's disease??? I guess I am in desperate need of answers that no one seems to have.:crying: Thanks much

[renidrag]

I am so sorry for the loss of your Husband. I sure you think of him every day. I can't answer questions on the Celiac disease but as far as Wegener's the diagnosis from the Doctors is always delayed and in your case too late. I am sorry for this. As others reply you will find misdiagnosis and no diagnosis is rampant. I know when I asked questions of my PCP he would look at me like I was a fool. I finally, after diagnosis, fired him. And it felt good. WG presents usually in the sinuses as others will tell you. Please ask any question you want, we rant at each other help each other and have fun with each other. Welcome.
Dale

[drz]

There are some suggestions that autoimmune disorders often seem to go together so if you have one disease you may well be more likely to have another. My GPA expert told me that a history of ear and sinus infections may well have contributed to my getting Wegs later on.

[mishb]

Hi Flowerhouse and welcome to this wonderful Forum.

I am so sorry for your loss and also sorry that you had the need to look up this crazy disease :crying:

There are so many people on here that can answer (or will try to) any questions that you have.
No question is too silly or crazy.
Please don't hesitate to ask away - you need answers to help you get a hold on what has happened, and who knows, the answers may help someone else, along the way.

Celiac itself would not be a cause for Wegener's, however, many on here swear by a gluten free diet or dairy free etc, and say that it certainly helps reduce their symptoms.

[windchime]

Hello Flowerhouse. I'm deeply sorry for your loss and I understand your need for information. It is unfortunate that his late diagnosis resulted in his passing and it happens much too frequently. You will find a lot of information in the archives and of course feel free to ask any question you need to. Someone on the forum will most likely know the answer and/or have experienced it themselves.

Again welcome and I'm sorry you had to find us in the manner that you did, but I'm happy that you DID find us. We are a great support system for each other. Hugs to you. :hug2:

[annekat]

Welcome, Flowerhouse. I also am deeply saddened by the loss of your husband. If only he had been diagnosed earlier. It is far too common a story. I can't give an educated answer about the celiac disease, but I do believe it is autoimmune in nature, is it not? And I've gotten the impression that some people are predisposed to autoimmune conditions and therefore may have more than one, though as Michelle says, one wouldn't cause the other. I know there are people on this forum who have at least one other AI disease besides Wegener's.

Please continue to join in our discussions, and search the archives for any info you can find on the WG issues that concern or interest you the most. We care about what you are going through and are here to help in any way we can as you try to come to terms with this heartbreaking loss.

[Alysia]

I am so sorry for your loss of your husband :crying: if you feel like, you can light a candle for him on the weggie map.
please tell us more about him. what was his name ? how long he was diagnosed before he passed away ? what happened to him ? please, tell us ONLY if you feel that it can help you with his loss. not if it is too painful.
I have colon involvment of WG and the symptoms are similar to Celiac. I don't think that the Pizza that he ate, caused him more damage. at least he enjoyed it a bit.
you are now part of our weggie family. so come and write and let us hold your hand.
I believe that your husband is now your guardian angel. :hug1: