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Renaye

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Everything posted by Renaye

  1. Renaye
    I see my rhuemmy doc every 6 months and have blood drawn one month prior to the appointment. I also have an opthamalogist instead of an optomistrist. This doctor will do a more in-depth exam. The exam takes several hours and you get to look at cool pictures of your eyeball. Plaquenil has a low risk of retinal damage with increasing years of use. My eye...
  2. Renaye
    I have a positive ANA 1:320 with homogenus/speckled pattern. Referred to rhuemmy by gastro after he tested for celiac and ANA. By the time I got in to rhuemmy, I was an emotional mess thinking I was going to drop dead anyday. I was extremely fatigued, have telangestias on my hands and face, possible minor raynaulds, cold all the time, mild joint pain,...
  3. Renaye
    I take plaquenil. I have a positive ANA, low white blood count and low vitamin D level. I have positive DPG IGg and IGa but no other celiac markers. Biopsy was negative. I have mild joint pain, fatigue, dry eyes and mouth and severe constipation. Plaquenil has helped a lot with pain and fatigue. Gluten free diet has not helped with constipation but...
  4. Renaye
    I am convinced that that when things are unbalanced in the gut that it can cause all kinds of problems. I take miralax for several days then I go for about a week to 2 weeks, then I have to take it again. I don't go at all on my own. Have not tried magnesium yet but have a sample of natural calm in my cabinet. I agree, if you can't go then it affects your...
  5. Renaye
    My family still eats gluten but most meals are gluten free. With that said, I have been gluten-free for over two years and still have damage in my small intestines so I am buying new utensils and super cleaning/organizing my kitchen. It seems to be difficult with kids in the house. My latest complaint is that the kids wash their hands in the kitchen sink...
  6. Renaye
    I have not used waffles or waffle fries for a bun yet but I bought these great big mushrooms and used them for a bun. You can either slice one in half, if it is big enough or use two of them. Only problem is if you grill them or microwave them they get juicy. I usually use these because there are very few bread products out there that don't use eggs and...
  7. Renaye
    Thyroid antibodies have all been normal. One tsh reading in 2011 before gluten-free diet, was low at 0.307 which is hyper, right? The rhuemmy doc will rerun them this month. I looked more in depth at the SCD diet and didn't realize there was a whole section for celiacs. I am planning on getting the book this weekend. I generally think I eat pretty good...
  8. Renaye
    Thanks for your help everyone. gluten-free in DC - All my biopsies have been negative?? Strange...I will look into making my kitchen more gluten-free friendly. I thought it was pretty good but may need more help. I believe my main concern for cc is that we butcher our own meat and my husband, no matter how much I tell him that spices need to be mccormick...
  9. Renaye
    I just changed gastro docs because mine quit!! This doc found scalloped mucosa and changes in the duodenum consistent with celiac. I also had positive DGP IgG and DGP IgA in 2011. Yes, I am taking plaquenil for fatigue, mild joint pain, dry eye and mouth. I have a positive Ds-DNA for lupus but no major problems or organ issues. The fatigue is much...
  10. Renaye
    I have been gluten free for 2 years, dairy, egg and peanut free for a year and just got an upper GI recently and damage still looks bad. In fact, I don't have a celiac diagnosis but did test high for several gluten antibodies. I also am taking plaquenil for an unidentified autoimmune disease like lupus and am constipated without taking miralax. I guess...
  11. Renaye
    Hi I am using the buckwheat cereal from Pocono and I agree, the texture is blah!! I do cut up an apple or a pear and boil it tender, add honey and cinnamon, use the juice to cook my cereal and combine the two. This is the only way I can eat it. Not my favorite but since I eliminated eggs and dairy also, I don't have much of a selection for breakfast. ...
  12. Renaye
    I have been gluten-free since April 2011 and dairy, peanut and egg free since April 2012. Nothing has made a difference yet. I believe I was tested for T4 free and T4, T3 uptake and thyroid antibodies which were all in normal range. Before I went gluten-free I had a low TSH 0.307 but now miraculously is within normal range. I don't know details but am...
  13. Renaye
    My pain that I have had for many years is gone after I quit gluten but not the constipation. I have some other intolerances - dairy, peanuts and egg that I have taken out of my diet but that has not helped the constipation either. I have tried various forms of fiber and now take miralax which works but I really don't have "normal" bms with it. I generally...
  14. Renaye
    I wonder if going grain free would help with constipation? I am already off of eggs, gluten, peanuts and dairy. Renaye
  15. Renaye
    All biopsies came back negative....good news but it doesn't explain intestinal damage and constipation. I think my blood sugar is within normal levels. I don't eat much fruit or sugar. Renaye
  16. Renaye
    I am taking plaquenil due to fatigue and mild joint pain. Obviously the rhuemmy doctor believes I have something. Upper GI was done a year prior to fatigue and then 6 months after a gluten-free diet. I am being tested in February for a whole bunch of things like lupus, sjogren's, mixed connective and scleroderma. It has been negative in the past. RA...
  17. Renaye
    I had to get a new gastro and he did an upper and lower gi yesterday. Everytime someone does these, the results are the same. I get a handout for h-pylori but my test will end up negative. It looks like celiac but the biopsy will come back negative too. I have a positive p anca but my colon is normal. So I am waiting for this doc to get the results back...
  18. Renaye
    I am having an upper and lower gi procedure on Wednesday. Eating bland stuff today. I am also having gi trouble but have already had a negative biopsy before. Good luck! Renaye
  19. Renaye
    I am scheduled to see a new gastro this week as my old one decided to leave so I will ask him and work with him on the insurance. I remember that day that they took 13 vials of blood from me. Everything else was readable. You never know. Here I kept thinking that I had something else wrong. Wish me luck and thank you!! Renaye
  20. Renaye
    I am another prometheus celiac plus person. My results were a postive DGP IgG and DGP IgA only. The genetics part was unable to interpret. Mine says that there were substances present in the sample that interfere with the HLA typing method. I have searched and can't find out what else this means. I had a negative biopsy, but positive ANA. Being treated with...
  21. Renaye
    Gemini Thanks for your kindness. I will look into the vitam k2. I am just walking and jumping rope for my osteo. I see the rhuemmy doc next month and will ask him to see if my effort is paying off. Trainer, huh....I am impressed!! I have very mild joint pain in my hands, wrists and my feet but very tolerable since plaquenil. I am very thankful that I found...
  22. Renaye
    Gemini Yes I have had my iron, ferretin and thyroid checked. My bloodwork is all normal except a +ana, low vitamin D and I also have osteopenia. So I take vitamin D and calcium. Even my celiac bloodwork is messed up and really not sure since I had a negative biopsy. My gastro resigned suddenly so I am looking for a new one. Hopefully he will have some answers...
  23. Renaye
    Thanks for the support. I have several weeks before the confernece so I will ask about the catering. Gemini - I have been gluten-free since May 2011. Not sure how much it has really helped as I started plaquenil for fatigue at the same time. I am still constipated but won't ever go back to a regular diet for fear of getting something worse than sjogren's...
  24. Renaye
    I also have sjogren's and I get extremely tired and don't want anyone at work to believe that I am not capable of doing my job. It is really not the eating part. I just worry that I may not make it to retirement. Renaye
  25. Renaye
    My immediate boss and co workers know of my many health troubles but corporate doesn't and I plan on keeping it that way. I have to go to a conference where they serve lunch with a guest speaker and then have break out sessions. I am doomed. I know I can try to call and find out who is catering, I can hide and eat in the bathroom or just look at my plate...
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