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Another PO'ed Celiac

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  1. I'm not sure who might be following this thread anymore but I thought I'd add some more interesting information into the mix. So because of my constant battles with candida, my immunologist thinks I have chronic mucocutaneous candidiasis which fits as I have struggled with yeast problems for years. It has also been shown to raise Gliadon antibodies (here is just one of many studies proving that fact: https://www.ncbi.nlm.nih.gov/pubmed/19549274). This fits the pattern of when I have abdominal pain, when I tend to have hormonal problems, when I have more 'brain fog' etc etc. After I was t
  2. Thank you to all of you with advice and encouragement because I have read each part and it's helped me try to figure this mess out just a little bit more at a time. I thought I'd post a quick update to this ongoing drama in case anyone was interested or curious like me. I am actually more confused than ever after meeting with my genetic counselor. Do I have this blasted disease or not? I'm not trying to be in denial, but I also don't want to live this way if I don't actually have to! Which really is extremely important to me. It's literally killed my social life and between what I can't
  3. Just thought I'd post an update in case people are curious. I got the results of genetic testing. I do have the 'Celiac gene' but it looks like I also have HFE hemochromatosis. This actually explains a lot... scarily a lot. Not sure where I'm going from here. Still frustrated beyond belief. NOT doing the blood draining treatment thing. I don't know how advanced my case is yet. I have more testing to do when I'm able to tolerate it. Just fed up and don't want to be messed with anymore. I've got POTs and am showing more and more heart issues meaning my stimulants will be taken away and
  4. I just re-read your original post and I am more convinced than ever that it's Candida. The rashes and feeling like something is stuck in her throat are both things I have been very familiar with! Look in her throat with a light and see if you can see any white patches of any kind. Candida has been seen in some studies to actually bring Celiac on and also make it much worse. Look up the symptoms of oral thrush and Candida and print them out and take them to a doctor with you if you have to. I would insist on it, especially if she's had to use any OTC yeast infection treatments lately or as
  5. It can but they have shown time and time again that the liver bounces right back after the medication is stopped. I had some severe abdominal pain, cramping, bloating and major pain that went away after 2-3 days on Fluconazole! I showed visible signs of liver damage in the form of mild jaundice after being on it for 5 weeks, but blood work done since I stopped the medication shows no damage whatsoever. When you're in that much pain and there's a medication that can help, the risk can be worth it. The comment about her catching a head cold really makes me suspicious about Candida! A he
  6. Thank you for the clarification on thyroid and parathyroid. I was too tired to look it up last night. I am not jittery and don't consume a lot of caffeine. 1 zipfizz has less caffeine in it than a cup of coffee. And I just started back up coffee yes, but it's about half a cup a day. That I drink throughout the morning and the zipfizz throughout the afternoon/early evening so it's spread out through the day and not actually a lot. I have plenty of calcium in my body so I don't need more of that but I have been trying to add in the magnesium. Magnesium Calm is horrible on my system but th
  7. Totally understandable and respectable. Like an addict who can't be helped until they want to be...
  8. Try treating Candida? If she feels better after a week or so on something like fluconazole, I bet that could be the issue. It can cause all that and more! Especially after exposure to antibiotics. It can't hurt and is a rather simple step to try to rule out.
  9. Yes finally understanding! Thank you! This is exactly what I needed! I keep stressing to my doctors that I think I have a thyroid issue and have been avoiding Vitamin D because my instincts are telling me to and I've learned to listen to them. I have always been super sensitive and somewhat empathic my whole life. I am used to to and it is exactly why I don't watch TV and am hauled up in my room and have connected with a wonderful and supportive community of like minded beginning artists, most of which have health issues of their own and we've all chosen art as an outlet. This place is a
  10. BTW...I don't have diarrhea! And have been through the battery of tests for autoimmune disease and they have all been normal. I have been told by a very reputable doctor who is up on all the latest research and is brilliant and highly regarded in his field that the chances that I have an autoimmune disease with these kinds of numbers is astronomical. Something else is going on and he's determined to find it. Sorry but I don't see how it's possible to have Celiac which is an autoimmune disease, without some kind of test showing I have an autoimmune response. These are not the normal standa
  11. I CAN'T EAT WHOLE FOODS BECAUSE OF MY SLEEVED STOMACH AND I'M BEING TOLD TO CUT OUT EVERYTHING PROCESSED. SERIOUSLY? I have literally been told not to eat every single food out there by a combination of difference sources. By the way, supplements are processed. So are protein drinks and anything that comes in a can. I am not lacking in any vitamin or mineral except for vitamin D and I have had many many tests. This is why nutritionists and naturopaths are stumped. Not only are my tests in normal ranges..they are practically in perfect normal ranges, right in the middle. I have take
  12. Like I said, one by one everything in my life is being taken away from me while all I do is continue to get worse. The only vitamin level I've been low in is Vit D...but Vit D supplements cause kidney stones. My B12 is through the roof and yeah I have suspected MTHFR mutation so I'm on hydroxo and adeno forms of B12. I did magnesium Calm which caused intolerable cramping so I'm trying other forms. I'm on top of all of that but the more I learn the more I realize that it's a hell of a lot more complicated that any doctor has the patience to figure out which leads to overwhelming frustration
  13. "Allowed: brown and white rice; all fresh fruits and vegetables; fresh meats; fish; eggs; dried beans; unseasoned nuts in the shell; butter; plain yogurt; plain milk, and aged cheeses; oils; vinegar (except flavored or malt); honey; salt. Beverages allowed include 100% juices, water, and Gatorade." Ok again..I cannot eat most of what is on that list! How would I survive 6 months on that? And what do you mean by non-responsive? I have no intestinal problems with gluten. Before my gastric sleeve the only foods I had trouble with were fructose in juices and aspartame. No allergies t
  14. After...The sleeve was over 4 years ago, the Celiac last December just before Christmas. Before going gluten free, I had no stomach issues at all, just a large ovarian cyst that was sitting on my bowel causing pain with movements, which is why they talked me into doing the stupid scopes that I did NOT want to do. Once it ruptured (which was a whole traumatic 10 page story in itself) and the pain from that went away, the bowel pressure/pain was gone. (Well, no stomach issues other than the ones the sleeve caused with certain foods. That has pretty much been the same since I had it done.)
  15. Sorry, coffee was one of the things that was suggested I eliminate because of the amount of milk I used to add to it and the caffeine causing problems since I take a stimulant for my sleep problems (narcolepsy/hypersomnia) and ADD. So I did to see if it would make a difference but now that I see it didn't, it's likely going to come back at least a couple times a week. Yeah the gastric sleeve definitely causes me a lot of the problems and it's the constant pain I'm in which is what causes me to live in my room. We've been trying to figure it out for some time now. My scans show minor proble
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