We just arrived home from the Cleveland Clinic and are getting ready to go somewhere else soon. I’ll make this short and sweet. There is some suspicion that Lizze may actuslly have Celiac disease.
I had actually forgotten about this but Lizze reminded me today.
Lizze has always tested positive for Celiac via the blood test but when she was scoped the biopsies came back negative. They always said that it really looked like the biopsies would be positive but they weren’t.
Her new doctor is going to review her records as soon as they arrive and decide where to go from there.
Celiac would actually make sense but we’ll have to wait and see…. 🙁
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Rob, I’m going on a trial gluten-free diet myself because I’ve having symptoms similar to Lizze’s with the added fun of hypothyroid-like symptoms. All blood tests and metabolic panels come back normal but I just don’t feel right. If you have some free time (I know, haha, right?) this is a really good, clear article on the links between gluten intolerance and auto-immune disorders, including rheumatoid arthritis, fibromyalgia, and other AI diseases. Good luck and best wishes! http://www.healthnowmedical.com/blog/2011/07/05/is-gluten-intolerance-the-cause-of-autoimmune-disease/
gluten related antibodies (antigliaden antibodies) can attack any part of the body, so maybe it’s not attacking her gut, but her brain, her eyes, her joints and other parts of her body. I had a coworker with similar issues to Lizze. She would get nausea all the time, aches and pains, dizzy spells after eating gluten. Her scope was also clean so she would cheat, and then feel absolutely horrible with all these symptoms. She would even have episodes where she was spacing out and docs thought she was getting seizures. I have to avoid gluten or I get high thyroid antibodies, and terrible mood swings. My oldest son gets anxiety and irritability through the roof (he’s autistic).
It doesn’t hurt to do a trial. If she likes grains, she can do oatmeal for breakfast. You can buy a grain mill and grind up brown rice and GF oats and buy some tapioca starch and a little corn starch. There are some gluten free cookbooks that have all their recipes using the same baking mix, so you just need to throw a bunch of it together (they tell you how), and then use that in place of regular flour. It is a learning curve, but so worth it if she feels better.
rmagliozzi i don’t recommend anyone with celiac to eat GF oats. Oat protien is nearly identical to wheat. I personally double over in hellish pain with oats. Someone was saying even quinoi is too similar also which bummed me out
Why does she need a diagnosis? Insurance won’t pay for her food. That dr just wants money
biopsies for celiac are barbaric. take 6 weeks of your life and go gluten free. It’s free, not painful, you don’t have to make and pay for a dr. appointment.
If the Celiac panel is positive, then she is highly likely to have Celiac, regardless of what the biopsy says. The damage from CD is very patchy at times, so the doctor might just have not taken a sample from a damaged area. Or the visible damage has not occured yet, but likely will. I think her best bet to feel better & to minimize further damage is to go gluten-free. It is a simple thing to do to alleviate the symptoms without haing to await insurance approval or travelling to a hospital every day for 3 weeks.
MichelleLawPink that’s great advice. We have CD on my Mom’s side of the family. My Mom almost died before she was diagnosed and put in the diet. She went her whole life without knowing.
Her doctor is going to review the records first, then decide whether to rerun any pales or make the official diagnosis. She’s can’t go on the diet until she’s diagnosed because that can throw off the tests.
Excellent advice though. Thank you. 🙂
lostandtired MichelleLawPink
Absolutely correct! My son tested positive for wheat & barley allergies at age 2. I knew nothing of Celiac back then, so I immediately put him on a GF diet, only to have the doctor suggest a Celiac panel a month later. Long story short, I just kept him GF since he still has an allergy regardless of the CD dx. Last year, we did get the genetic Celiac test done, just to see if it’s even possible that he has it/could have it. They were negative, so it is “just” an allergy.
i have heard of the connection of migranes and celiac ,and the ongoing inflammation may also be contributing to the Fibro flares , My mother has found much relief with diet changes and Celebrex , she went from constant pain and stiffness to almost being free of pain most days,(of course some days she does have pain ) but she has her life back,. thoughts and prayers to Lizze ,hope she gets the answers she needs, Elizabeth Hasselback has a great book on Celiac, recovery is possible . And there are more and more products to support Celiac diet Good Luck Gloria
ChrisCrane thank you, we both really appreciate your thoughts and prayers 🙂
Sending prayers for Lizze. Hope she can get some answers.
shawneerenee31 thank you so much. 🙂