Hi. I'm new here. I am convinced my husband is Celiac. He has so many related issues it's not even funny: neurological issues, demi seizures, eczema, digestive problems, a history of food allergies, migraines, "lesions" on brain MRI.... none of these things has had a conclusive diagnosis and he's been shuffled from doctor to doctor over the last ten years.
He is going to schedule an appointment tomorrow to be tested, but I've removed gluten from our entire household just in case this is the problem. He has agreed that going off gluten is wise. It seemed the right thing to do- to treat the symptoms just in case. Then someone told me that if he's off gluten before he gets tested he could get false negative results. I don't want him to go back on gluten, but I don't want him to have trouble getting diagnosed if this is the diagnosis that will help him get better. Any advice?

There is another member on the board with brain lesions. She'll have more to say I'm sure.

It's true that being gluten free will effect the test results. It's supposed to. After being gluten free for a while tests should be negative, it's a sign that the diet is working.

One thing you could do is have blood drawn ASAP before your husband has been gluten free for long. You might be lucky and he might still have antibodies to show.

Has he felt any better on the diet, or is it too soon to tell?

Pauliina

Hi, I am the member I think the other poster was referring to. Do you remember what they called those lesions? Was it UBOs or unidentified bright objects? If so outside of the US those would be diagnostic by themselves of celiac disease with neurological involvement. He sounds a lot like me, including the over 10 years looking for a diagnosis. For me the blood tests were less than worthless because I am one of the 'lucky' 30% that don't show up on blood work.
If you don't want him back on gluten one thing you can do is to go with Enterolab testing. If you test with them he won't have to go back to eating poison to get a result. Or you could continue with the gluten-free diet and then after a couple of months if there is any doubt challenge with gluten and see what happens.
If you read my signature you will see how living gluten free has saved my life and my sanity. Too bad it wasn't soon enough to give my kids a childhood and before my celiac related problems destroyed my marriage. It took 15 years and a real savvy allegist to diagnose me, he did the diagnosis with a elimination diet. Why none of the multitude of doctors suggested it I don't know. I had the diagnosis confirmed by my GI after his gluten challenge of 1 week almost killed me.

They didn't call the "lesions" anything other than that, but they were indeed "bright spots" that were unidentifiable. Also, I notice you have an Aspie child. My husband is Aspie as well as Tourettes. The latter was diagnosed as "atypical" because it showed up uncharacteristically late- in his late teens. The neurologist was hesitant to call it Tourette's but had no other name for it. We have only just eliminated gluten for less than a week so we have yet to see any definite alteration, but if this is all a result of untreated Celiac's disease I imagine it will take some time to make a noticeable difference.
I will encourage him to go get the blood test as soon as possible and then we will just go from there. We have a great doctor who will do whatever he can for us. I will just pray that it doesn't involve too much testing.

Do make sure to do the blood test before you start the diet. False negatives are common even when on a full gluten diet. You may actually be surprised how quickly things change for you husband. My Aspie son now has made a great deal of progress that we wouldn't have seen otherwise. He also has lost all OCD features he had. My husband also could have been considered an Aspie, one of our family friends even asked once if he was. He is now much easier to talk with. We all remain rather isolated by choice, and my son still does have some issues with socialization but we have all improved a great deal. The diet isn't a cure but for many with Autism spectrum disorders it is beneficial.
The tourettes may also be positively impacted by the diet. I was plagued with many tics and a need to constantly move one leg since childhood. Even when at rest the leg was always moving. this was the leg that was 'dead' on electrostim and both had lost reflexes in childhood. I can't do the same movement now even if I try and the nerves have grown back enough so I now have reflexes for the first time since age 6.
There are no quarentees that he will get relief but you will never know if you don't try. Be sure to give the diet a good shot even if the testing shows negative.

Do you think, then, that he could eat gluten free until a few days before his blood test? Would that make a difference?

Yes it will make a difference. Blood testing is not a really great way of diagnosing us to begin with. To get the best chance of having a positive he really needs to continue on a full gluten diet until he has the blood drawn and, if you choose to do one, the biopsy. I should note that if he is already gluten free and has had some resolution of problems or gets ill when gluten is added back that is also diagnostic. For some of us it is the only way to know for sure. Our bodies in most cases give us the answer we need.

Thanks for all your advice. I didn't realize how serious some of his symptoms were. He went yesterday to the internist he's been seeing for years. The doctor basically slapped his forehead in a "doh!" moment and apologized profusely for not adding it all together. They did the blood test, but basically it won't matter. My husband has what he thought was eczema, but is actually dermatitis herpetiformis and joint pain in addition to all the symptoms I mentioned before, which we didn't think to associate with gluten. It seems fairly obvious now. The blisters on his hands went away after being gluten-free for a week, and when he had to eat some gluten for a couple days before his test, well... guess what? It came back. Duh. I guess that's a diagnosis all on its own.

The blisters can be biopsied (they need to take a sample of skin next to the blister, not in the centre of the blister) and if it's DH, no need for any other tests. DH means he has celiac and needs to be gluten free.

Pauliina

And dh means gluten free soaps and lotions, too

That's interesting. Good information. Thanks.

That's fantastic news. If the blood test comes back negative he'll have to ask the doctor to do that. Thanks.