MomBTired

I once got paranoid about my kiddos numbers, then as he was diagnosed with other autoimmune diseases, I was told to stop looking at the numbers and watch the symptoms. He's been totally gluten free for almost 2 years now but I was told his test would probably not get to normal limits because the other diseases affect that number. My son is one of the extreme...

Hey, I actually have some answers for some of you. My son has Celiac, horrible pain, muscle spasams and twitches like crazy, went through 14 crazy doctor years with him and it took that one neurologist who said, of course he's a mess, more than 60% of people with Celiac disease have small fiber neuropathy. His nerve/skin biopsy came back positive. Celiac...

If I were you, I think I would get second opinions from another group of doctors in another place. It took 14 years for someone to figure out my son. Peds was so completely clueless, he had to be an adult before someone figured it out.

No, he was first diagnosed with the skin biopsy. He has an autoimmune skin disease that can come along with Celiac. So after that he had the scope and bloodwork. I don't know how many biopsies he had. Probably just one since he was so swollen. All the other tests were positive. He does black out due to his blood pressure dropping when he stands. He was diagnosed...

Misread then erased my comment since I can't find delete

Uh wow, wish my son was this detailed. If he was going to share his story, it would simply be, "life sucks!" So my 20 yr old has Celiac Disease. He went years of going through gastro problems, many MANY scopes and not until 2 years ago, did he come up positive for Celiac. He was first diagnosed from a skin biopsy that ended up being dermatitis herpetiformis...

We kind of went through something like this. My son's best friend got married and she was upset he wouldn't be able to have wedding cake. I mean, it was stressing out the bride. I told her I would go get him a cupcake to bring. Then life was all good As far as his parties go, he's 19 so at the moment he just brings snacks they all can eat. Most Frito Lay...

Son was homeschooled because of all the undiscovered now discovered medical issues. He decided he will be adopting later in life because he doesn't want his kids to go through anything he has. He suffered so long, it's amazing that he even has a small intestine!

You can still use the wipes, I do. I don't use a sponge. I use dishcloths instead and change it and the kitchen towel before I make dinner. Everything goes in the dishwasher and if it can't, gluten won't touch it. It's however you clean. I like the wipes since they go in the trash after

Yup, I know. He's 19 and doesn't care what shape they are

I didn't read all the comments yet, but I am 45, not celiac and having woman issues also. It's part of menopause. Ask if you can skip the sugar pill week, it helped me. I thought I was hemorrhaging last month. You need to find yourself snacks that you like that are gluten free. My son is 19 and Celiac. After his scope and when he was still out, Dr told...

Yup and yes. My son eats the littlest bit of gluten, breaks out with DH and itches like crazy. I don't know where you live but you need to be careful about eating fries out. They share fries in the vats with gluten stuff. My son is safe here at a few restaurants for fries. Chick Fil A is safe, Red Robin and at home, most Ore Ida types are gluten free

Some of the great people here taught me something. I was going crazy like you. My son is down to 32 as his lowest in 2 years. Found out that the number can be elevated by his thyroiditis and his gastro doctor doesn't know that. So other autoimmune diseases can keep it high and judging by the people here, think it's rare to only have Celiac

Here's a decent article about it, My son is an overachiever and has the rarer form Open Original Shared Link

Took forever for them to figure out what my son has. After a nerve biopsy rarely done not to mention another test people don't generally get but between the two, showed his nerves in his colon were dead and the biopsy showed autonomic small fiber neuropathy. Apparently, if you have autoimmune diseases, pretty good chance you have this form of neuropathy,...