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Am I Seeing Celiac Where It Doesn't Exist?
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I feel like the kid from the Sixth Sense, "I see celiac people".

But seriously... I was just diagnosed through biopsy in June, and have been gluten-free ever since. My symptoms are improving, and I'm doing okay.

However, I now have concerns that my husband could also be celiac. He's having quite a few health problems. I really just wanted to see if other people had these particular illnesses, and were diagnosed w/ celiac.

So, he had multiple, large blood clots in both his lungs (pulmonary embolisms) late last year. The doctors said many looked "old", and that new ones had been building on top. We were very lucky to have discovered it in time. We never found an answer, why he got these, he had not traveled, he had not had a physical trauma, nor genetic issues.

We've been to the ER with him about 7 times in the past year, with odd symptoms, arm and leg numbness, chest pain, shortness of breath. CAT scans show that his clots have not returned, thank goodness. After many, many tests, they discovered he has some stenosis, degeneration and bone spurs in his spine, in at least two seperate pairs of vertabrae. It helps explain many of his symptoms... but I have to wonder why all the illnesses are suddenly popping up. He just turned 40 years old.

He also is often tired, naps a lot, joint pain... but he works a lot and is a tall big man...

I have seen people discussing bone degeneration and blood clots, are these somewhat common celiac issues... or am I just putting together puzzle pieces that don't belong?

He's been very supportive to me as I have been learning, and changing my life due to celiac. When I have bought up the possibility that he could have it as well, he shrugs it off. I am also about 99% sure my father is celiac, with good reason, he has fibromyalgia and is a textbook celiac case. I think my husband just believes I am seeing it everywhere now.

Thanks for any insight.

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It is entirely possible your husband has it, but many many other autoimmune diseases can cause blood clotting problems and blood circulation problems. I know Lupus patients can get blood clots and I believe that Raynauds affects circulation too. Diabetes can cause clots... I would look through some of the other AI disorders and see if any fit better.

In the case of your father, I would say that is probably more likely because AI disorders tend to run in families. Would he be open to testing for celiac and other AI disorders?

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It is entirely possible your husband has it, but many many other autoimmune diseases can cause blood clotting problems and blood circulation problems. I know Lupus patients can get blood clots and I believe that Raynauds affects circulation too. Diabetes can cause clots... I would look through some of the other AI disorders and see if any fit better.

In the case of your father, I would say that is probably more likely because AI disorders tend to run in families. Would he be open to testing for celiac and other AI disorders?

Hmm, that's true, his uncle just had a clot recently, and he was getting tested for lupus, I hadn't thought of that. Thanks for the advice, I will check out different AI disorders.

My father had the blood celiac test done, and it came back negative, apparently. He also has bone spurs and degeneration in his spine. He has a huge amount of crazy symptoms and decades of serious health problems. I've discussed it quite a bit with my parents, and I do think he suspects he could have it, but I can;t see him being very willing to make the lifestyle and diet changes to get better. I will bring up the idea of looking into other AI diseases with him as well. Thanks again!

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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