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pikakegirl

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Everything posted by pikakegirl

  1. pikakegirl
    Things i wish i was told when diagnosed: Get an extensive vitamin panel done after you start your gluten free diet to see where you need supplements. You may have leaky gut. Get a stool sample done to check your flora balance, you may need probiotics. Check other genetic factors like vitamin converson MTHFR and B6, etc Watch for dry stomach...
  2. pikakegirl
    I found that most D3 is made from lanolin (sheep skin oils) and many have issues with wool allergy. Blue Bonnet D3 is sourced from fish. Use it everyday. Amazon.
  3. pikakegirl
    I did not have any help after diagnosis but if i could go back and give myself help i would tell myself that healing takes lots of time so buckle up and learn to be patient. The body is strong and is healing the minute the gluten is eliminated. However the gi is weaker and mine full of candida as well as malabsorption problems like leaky gut. I found my bifida...
  4. pikakegirl
    You are justified in your feelings about coping in a glutened world. It took me about a year to put my foot down in my own home and make it gluten free after others mishandled thier gluten foods in the kitchen. Iwish they had cared enough to do it for me but that is my lersonality type not theirs. Dont get me wrong, they love me but i have concluded that...
  5. pikakegirl
    First I send my sympathy. 10 years ago i was diagnosed and sent home being told dont eat gluten with no health plan or follow up. I took it upon myself to research like a maniac. It took 6 months for my blood work to get normal. I too began by eating single ingredient foods, dont eat out or anything anyone else made. I have silent Celiac so cant afford to...
  6. pikakegirl
    Interested to find this out. Have seen many chiro for T issues. Granted had head on car accident but no nerve pain until Celiac. Also have dry stomach lackibg digestive enzymes. Not a coincidence when i read members issues. Nerve pain is more of an issue specifically upper body use of arms and shouldets. than malabsorption 10 years after gkuten free.
  7. pikakegirl
    Gluten was not my culprit. Citric or ascorbic acid cause bladder infections for me. No citrus fruit or foods with preservatives of these acids or I am in immediate infection. Drs seem perplexed with me but I recently found out there is such a thing as anaphalaxis from citrus, so not really new. When you said fruit cake I thought of this.
  8. pikakegirl
    I have the asymmetry pain as well. Flares and yhen stops. Drs want to say Fibro but found many things in my bloodwork and genetic tests. Have single chrom for MTHFR so adding 3000 lmethylfolate helped pain intensity from bedridden to mobile. Have elevated Centrimere meaning immune system is attacking myelin around nerves in arms, legs, hips, shoulders. Get...
  9. pikakegirl
    Can realky relate. Before diagnosis i could eat almost anything. Silent Celiac. After gluten-free everything bothered my bowel. Took years to eliminate my diet down to 10 items. No multiingredient foods. After 7 years i am able to add more things. Some seem forever bad, beans of all kinds, choc,coffee,soy,etc. Found i have mthfr gene so body does not accept...
  10. pikakegirl
    Dont know if this was mentioned or already checked but the thyroid can be attacked by the immune system as well. I also have an autoimmune thyroid disease. I am a different person when my meds are off, sometimes just easily angered and grumpy. Everything seemes ten times harder and more complicated. My mother is the same way and we tell each other when we...
  11. pikakegirl
    Mewunicorns, first love the name. Second i am so sorry for your new membership to our Celiac survival. Third i just want you to know that i have silent Celiac also. Took 20 yrs to diagnosed. Lived a life with strange illnesses befalling me slowly but traumatically. Now i see all related to active Celiac. At first everything was about food and healing. Used...
  12. pikakegirl
    Yes, since i went gluten free bottled water, tap water and charcoal filtered water like pur make me cramp terribly. I found that bottle waters with synthetic viamins and minerals are the culprit. Also i found that acidic waters were a real problem. Got a ph strip roll and tested a bunch. Most were acidic. I found Crystal Geyser and a few others are alkaline...
  13. pikakegirl
    Yes, i was 230 lbs upon diagnosis. My crp had been high for over 10 yrs. The first year i lost 70 lbs of water. Then i started to realize my continued irratic gi problems were more intollernces from processed foods as well as things like dairy and legumes. I went on an elimination diet and lost 20 more lbs. I finally stopped at 135 lbs which was still healthy...
  14. pikakegirl
    The first symptom of Celiac that sent me to the hospital was 48hrs of cramping, then the panic attacks started. Multiple throughout the day. 1 year of this before the drs found hashimotos, but even on thyroid meds still happened weekly or at least monthly. 8 years later drs finally found Celiac. First few years still having panic attacks but then i found...
  15. pikakegirl
    I have similar pain, neuritis. After years finally found I also have the MTHFR gene which in my case means I am not able to convert folic acid to folate so it affects nerves. Right eye pain and migraine with carpel tunnel like reactions in muscles used most like hands shoulders. I take 3000 mcg l methyl folate by life extension each day. It has improved greatly...
  16. pikakegirl
    Yes I know that advice and may be true for many people but I have always had bladder spasms from cranberry juice and as a baby diaper rash from Orange juice. Seems from birth my ph has been acidic. I only recently have had bladder infections triggered by citric acid. Found that d-mannose once a day in my water stopped them. It keeps the bacteria from sticking...
  17. pikakegirl
    I had stomach pain for years at first even on an elimination diet. I had a dry gastritis not acid. Found drnking ginger tea after each meal stopped the pain but was also careful with my portions. All better now but it took 6 years. Wedderspoon makes a manuka honey ginger lozenge i use now once in a while. Hang in there. I found a food diary helped make some...
  18. pikakegirl
    I lost 90 lbs of water weight from inflamation the first two years. I became my perfect weifght. I ate rice 3 x day and 3 eggs a day so i dont buy into low carb. At the 7 year mark I gained 20 lbs from surgical full menopause and adding new foods. I found dairy causes my CRP to go up. I just saw a program Dr Oz, whom I don't prefer but his guest discussed...
  19. pikakegirl
    Microwave potatoes are filling. 6 minutes on 50% power then turn and another 6 minutes . For large sweet potatoes increase the to 8 each side. Canned gluten-free salmon, tuna etc with minute rice ready microwaveable. Libbys makes peas and green beans gluten-free naturals canned. Arrowhead Mills makes instant breakfast rice and shine as well as quinoa rice...
  20. pikakegirl
    I agree that this article is a scare tactic. Looks like this child was starved to death. Note the article states the parents did not seek medical help. Millions of children and adults have food allergies and intolerance but do not have this happen. Following a medical diet is a healthy choice for quality and quantity of life. These types of articles have...
  21. pikakegirl
    I also have a serious water problem. I have not been tested in any way but I my allergist said that there are no safe chemical testing for allergies. I get anaphylaxis from chemicals and have an epipen. Chlorine is a problem for me. When I drink tap water I feel like I have the flu and I got shingles when I tried Pur filtered tap water. We do not have floride...
  22. pikakegirl
    I second that, no kissing until teeth are brushed with gluten free toothpaste and mouthwash. Also if kissing a woman make sure lipstick, gloss, balm are gluten free. My S.O. treats it like a severe food allergy and our home is gluten free.
  23. pikakegirl
    Thanks, I have been told CFIDS and then Fibromyalgia but in my 30 years of slowly finding Hashimotos, Celiac, endometriosis, severe neuralgia and MTHFR, I am not satisfied with the Dr's prescription of heavy side effect symptom modifying drugs and rest. Rest has not helped. I was bedridden for 4 years from my neuralgia and the drugs side effects causing more...
  24. pikakegirl
    Thank you so much for sharing this. I am concerned due to the fact that I became ill and bedridden at 20 yes old. George Washington Hospital told me it was CFIDS. That was 1988. They missed Celiac which I was not diagnosed with until 2007. I have had all the symptoms of POTS and was diagnosed with SVT in 2006 before my Celiac was discovered. I have not seen...
  25. pikakegirl
    Sorry typos. Correction. Biliary Diskenisia and a Hidascan.
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