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Bubba's Mom

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Everything posted by Bubba's Mom

  1. Bubba's Mom
    I have low iron and high B12 as well. I thought it odd, because so many of us are low on B12? Let us know if they find the cause of your symptoms?
  2. Bubba's Mom
    Hello..and welcome! You are lucky to get a DX at a young age so you can omit gluten from your diet. It may save you from a lot of other health problems down the line? There's tons of info here about making sure you aren't getting cc and adjusting to the life changes. If you have any questions..just ask.
  3. Bubba's Mom
    If going off gluten has you feeling better..than obviously, it doesn't agree with you? The blood tests are wrong 20-30% of the time. Did you have the gene test? Sometimes that can show if you're likely to have a gluten problem. I agree with the others..you are very fortunate to be figuring this out at such a young age. So many of us go undiagnosed, or...
  4. Bubba's Mom
    I saw that show. I was really surprised. It looks like more people are becoming aware of Celiac?
  5. Bubba's Mom
    It's my understanding that other things can cause damage to the intestine, like stress, SIBO, yeast overgrowth, etc., that can cause a "leaky gut" situation. Once the wall of the intestine is compromized things can leak out into your bloodstream and your body reacts to it. Under those conditions, if the intestine heals, you may be fine with gluten. I...
  6. Bubba's Mom
    I think only someone who is crashing can really understand what it feels like? It's not that you just feel bad..it feels hopeless..dire! I'm shocked at what your hubby went through! It had to be very scary for both of you? I have some muscle wasting now. I've heard of that happening from statins, but it could be my body is just eating itself up...
  7. Bubba's Mom
    When I went to the new GI in December I told him I wasn't getting better and asked if it could be SIBO, yeast, or parasites. I told him I wasn't tested for it. He asked me if "Dr. Google gave me that diagnosis"? He said when he did the endoscope he'd check for fluid to test. He found none..and left it at that. When I was Hospitalized and he said he was...
  8. Bubba's Mom
    Maybe try Ann Arbor? I know it's a bit of a drive, but if you have an assesment there, maybe they could help with finding a Dr. more local? Open Original Shared Link I believe there's a Celiac center there?
  9. Bubba's Mom
    Hello..and welcome! The people that have "walked a mile in your shoes" understand what it's like to feel terrible and not get answers as to why. The knowledge here is outstanding, and the support is wonderful. Most people can't truly understand how you feel as you go through the illness and how to deal with it? The people here "get it". Feel free to ask...
  10. Bubba's Mom
    We've thought about environmental things. Nothing seems wrong here though? In the past our basement has had dampness, but my grown son moved back home last May and lives in the furnished basement with no problems. Our son is 32, but of no help to me at all. He's actually more of an agrivation. He's messy and has a drinking problem. Very unreliable. He...
  11. Bubba's Mom
    The only med I'm taking now is the anti-depressant, anxiety med, and the steroids. I hate being on steroids. They have a lot of side effects. A big fear of mine is becoming diabetic and steroids can bring that on. I was surprised they didn't do more testing too. Most GIs don't do the extended endoscope, so that's the main one I went for. I think...
  12. Bubba's Mom
    It's extra hard because my hubby travels for his work, so I'm on my own most of the time. He went with me to Mayo. I wouldn't have been able to travel without him...no way! He's really needed at his job and they weren't happy about him taking the week off when I went to the hospital here, and then when he took me to Mayo. This week he's traveling...
  13. Bubba's Mom
    Thanks Aly. I'm quite a ways from NYC, so I don't know how it would work with your Dr. "House"? It scares me that I'm not getting any better..and they don't have any answers. Traveling was difficult, even though I used a wheelchair in the Airports. Some of the tests at Mayo were scheduled for dates that they knew I wouldn't be there for. We told them...
  14. Bubba's Mom
    I'm home from the Mayo Clinic. They did the extended endoscope to check for Whipple's disease, a CT scan, lots of bloodwork, and a brain MRI. They didn't find Whipples, They don't think I have Refractory Sprue because I have less T lymphocytes than they would expect with that. I have a lot of esinophils(sp?). The damage to my intestine seems to...
  15. Bubba's Mom
    I try to keep hard boiled eggs on hand. They need to be cooked, but not watched over. Canned refried beans can be heated up a bit in a microwave and eaten with corn chips. I also keep So Delicious coconut milk on hand and Koala Crisp cereal.
  16. Bubba's Mom
    I had the injections several years ago, before my DX. I didn't have any bad reactions. Back then they did the injections into my knees once a week for 5 weeks. Since then..I've reacted to Eggland's Best eggs because of the soy that they feed the birds. If soy could come through to the eggs..I don't think it's a far stretch for the feed to affect the...
  17. Bubba's Mom
    My GI Dr. ordered the gene test. Any Dr. should be able to order it though? It seems like it would be a good idea if the bloodwork and biopsies tell two different stories? It's like another piece to figuring out the puzzle? Of course if your Dr. doesn't know how to READ the test..it won't be helpful. I asked for a copy of my rsults and looked it up...
  18. Bubba's Mom
    hmm...about $1 an ounce? Kind of pricey, but they'd be handy to carry..and healthier than corn? If anybody starts to carry these locally I think I'll try it?
  19. Bubba's Mom
    I got a good lesson in how many times I touch my eyes or nose this summer when I was helping my hubby chop up jalapenos. I even washed my hands afterwards..but boy did my eye sting when I rubbed it a bit later! Made me realize that everything I touch MUST be gluten free.
  20. Bubba's Mom
    My report read DQ alpha 1 01:03, 02:01 DQ beta 1 02:02, 06 So I have the DQ A*201 and DQ B1*202 that forms DQ2.2 Quotes from the article without the extra double-talk follows... DQB1*0202This allele is linked to several DQA1* alleles, the linkage with DQA1*0201 forms the DQ2.2 haplotype DQ2.2DQ2.2 is shorthand for the DQ α2β2 heterodimeric i...
  21. Bubba's Mom
    I needed the paper work right in front of me to compare what this article says. It lists the exact info my gene test results show. http://en.wikipedia.org/wiki/HLA-DQ2
  22. Bubba's Mom
    LOL..thanks for the laugh this morning!
  23. Bubba's Mom
    My resting heart rate has been over 115 for a LONG time! When I mentioned it to my PCP she didn't think anything of it. I also have a lot of trouble sleeping. I hope you'll post what you find out?
  24. Bubba's Mom
    After my DX of Cliac with severe villi flattening my insomnia and anxiety started to increase..rapidly. I asked my PCP to run a blood panel to see if I was low on some vitamin or mineral that might be causing my symptoms. She asked if I was taking a multi-vitamin and I said yes. She said "then it couldn't be a deficiency." She also said she questions...
  25. Bubba's Mom
    sooo..did you have the genetic test done? My Celiac panel was negative, but the GI did a scope anyway because of the severity of my symptoms. My damage was severe and visible with the naked eye. My biopsies gave me the Celiac DX. My PCP didn't believe my DX, because of the blood work and, I'm "too old at 54 to just be getting the disease." As a result...
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