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MomBTired

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by MomBTired

  1. 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...
  2. MomBTired
    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...
  3. MomBTired
    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.
  4. MomBTired
    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...
  5. MomBTired
    Misread then erased my comment since I can't find delete
  6. MomBTired
    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...
  7. MomBTired
    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...
  8. MomBTired
    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!
  9. MomBTired
    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
  10. MomBTired
    Yup, I know. He's 19 and doesn't care what shape they are
  11. MomBTired
    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...
  12. MomBTired
    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
  13. MomBTired
    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
  14. MomBTired
    Here's a decent article about it, My son is an overachiever and has the rarer form Open Original Shared Link
  15. MomBTired
    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,...
  16. MomBTired
    My kiddo has DH and was diagnosed with Celiac when that biopsy came back positive, then the bloodwork and scope were done to confirm. They were all positive. My son has a lot of gastro issues and has many scopes over the years. Every single one was negative until the DH showed up
  17. MomBTired
    Sadly you sound so much like my son, he's turning 20. I would get the scope just in case it's something else and to confirm it is celiac. When it does come back positive, also find yourself a good neuromuscular doctor.
  18. MomBTired
    Penguin, many things can cause constipation. Celiac did not cause my son's, it was a nerve disease that did. My son had absolutely no symptoms of celiac at all until the dermatitis herpetaformis showed it's ugly blisters up. Do not get frustrated that she wants to eat the bran flakes, if it helps her right now while she waits for help, so be it. It's better...
  19. MomBTired
    His scopes were always normal, biopsies also until this last one where he was so inflamed he was cut by the scope and the biopsy was positive also
  20. MomBTired
    Extreme mama here. My son was so sick, his gastro system was a mess, had more scopes than an 80 year old and didn't have a positive Celiac test for uhhh 8 or 9 years on that battle. His constipation was so bad that his large intestine was removed. A colonic manometry showed that his nerves were dead. Took many years to get the why to that question answered...
  21. MomBTired
    My son has celiac, I do not and I am addicted to bread. I sacrificed my bread for my son When we eat out, I get gluten. When I am at work, I get gluten. Our dinners are pretty much completely gluten free except pasta night when we cook together. He likes leftovers
  22. MomBTired
    Read about small fiber neuropathy. My son has the automatic one. His neuromuscular doctor told us that many people who have celiac end up with this form of neuropathy. Open Original Shared Link
  23. MomBTired
    Time for a new doctor.
  24. MomBTired
    You really need to see an allergist and gastroenterologist
  25. MomBTired
    My son is 19 and has been through an incredible ordeal with many doctors. It is hard to shorten the horrible 14 years he has been through this but here I go. It started with asthma and allergies. He was picking up every single illness the kids in school got, all year long. Pneumonia 7 times, chicken pox 3 times and yes, he had the shots. After 6 times of...
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