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artistsl

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Latest Celiac Disease News & Research:

Everything posted by artistsl

  1. artistsl
    Have you considered trying a B12 supplement despite? My son tested within range on B vitamin yet I gave him B12 despite and his lingering symptoms disappeared.
  2. artistsl
    This sounds really weird, but have you tried giving him vitamin B12? The reason I ask is because you mentioned that he has a strong habit of touching his mouth. My son had a strong habit of touching his eyelids. Not all the time, only during times when he might be perceived as being in deep thought or very focused on something. This was his only lingering...
  3. artistsl

    ARCHIVED Celiac without GI issues?

    artistsl replied to amandauher's topic in Doctors

    Oh, and yes to question #1. Infact, I've been told by my dermatologist that it's common for those who test positive for dermatitis herpetiformis to have no GI symptoms at all.
  4. artistsl
    Yes, we had the MRI, EEG and a large amount of bloodwork. All negative. He would have episodes where he didn't know where he was, auditory hallucinations, insomnia, sensory processing issues, stereopathy, issues with balance and coordination, etc. They were trying to rule out encephalitis. His symptoms disappeared after going gluten free. The decision to...
  5. artistsl
    Building off of what Ennis_TX mentioned about serotonin, you can try a good multi strain probiotic. There are some strains noted for the ability to produce serotonin and dopamine. I use the Garden of Life brand for my son. My son experienced insomnia from eating gluten so it was quite the opposite situation that you deal with. B vitamins have helped him tremendously...
  6. artistsl
    My son is five years old and suffers from neuro and psychiatric symptoms when he digests gluten. He tested negative for celiacs. We went to Boston Children's and they entered him in a genetic research study. We traveled to the Mayo Clinic and they offered to perform a gluten challenge and spinal tap from there. We have chosen not to pursue the food challenge...
  7. artistsl
    My intent is to get a positive on the DH. I guess I'm questioning the duration of a food challenge. My dermatologist told me to just eat gluten and call her next week when a blister starts to form. It only takes 2-6 hours for me to develop a blister after eating gluten. I guess I'll give it a couple of days of eating gluten and then call her back just to...
  8. artistsl
    My dermatologist told me it can take 3-4 biopsies to get a positive reading. She also told me to call her as soon as a blister starts to form and she will biopsy. It only takes 2-6 hours from when I eat gluten to when a blister starts to form.
  9. artistsl
    This is exactly the information I needed! Thanks guys!
  10. artistsl
    Fascinating. My symptoms are all extra intestinal (joint pain, DH, fatigue, brain fog) and I have been performing a gluten challenge lately. I too have noticed that there are some things that don't bother me as much. For example, I can eat some cheap store bought bread and react with DH and joint pain within two hours. I had a kaiser bun at a restaurant and...
  11. artistsl
    I have had an incredibly itchy rash on my knuckles since 2004. It drives me nuts. Keeps me awake at night sometimes. I went gluten free and after 6 months on this new diet the rash disappeared for the first time in 13 years! I was amazed. My annoying rash along with joint pain, fatigue and brain fog just totally disappeared. It was like I had stumbled upon...
  12. artistsl
    Do you still consume gluten and/or dairy? If so, I highly recommend that you eliminate both entirely. That includes anything with the ingredients; whey powder, casein, "lactose free" can be misleading as well. I also recommend taking a good probiotic regularly. Open Original Shared Link I use Garden of Life brand for Mood. I buy it in the refrigerated...
  13. artistsl
    If everything comes back negative I urge you to try avoiding gluten anyways. My son tested negative for celiac, twice, but we tried eliminating gluten anyways to see if it would help. He is now completely cured from his movement disorder and psychiatric complications. We've been to the Mayo Clinic to try to find answers. They said they don't understand the...
  14. artistsl
    Could it be endometriosis? My sister was diagnosed with PCOS. Her pain was so bad that she finally decided to have her ovaries removed. They realized during the surgery that she has endometriosis. She also deals with Hashimoto's and wouldn't be surprised in any way if she were gluten sensitive.
  15. artistsl

    ARCHIVED Celiac without GI issues?

    artistsl replied to amandauher's topic in Doctors

    I have yet to be diagnosed, but have had psoriasis on my hands and it took about 6 months gluten free for it to get better.
  16. artistsl
    My son experienced auditory and visual hallucinations, insomnia, emotional lability, sensory processing issues, steropathy, constipation, bloating, episodes of confusion, episodes of speech deficit, etc. His symptoms nearly disappeared after going gluten and dairy free (despite negative celiac results). The steropathy was our only seemingly lingering symptom...
  17. artistsl
    My son had severe eczema from dairy sensitivity. Might want to look into other possible food sensitivity.
  18. artistsl
    My son is very gluten intolerant and we were referred to allergy. I read recently about Eosinophilic disease which is a food intolerance that causes inflammation in generalized areas of the body. I believe there is a condition called eosinophilic pancreatic disease. I read about a 6 food elimination diet to treat the disorder, which includes gluten, but also...
  19. artistsl
    When we went on vacation, I prepped and packed herbs and spices into individually labeled sandwich bags and brought a crock pot with us. I used the hotel microwave to cook vegetables. We also purchased light weight plastic camping bowls, plate and sporks. A lot of prep work was made, but turned out very rewarding. I just wasn't ready to test out restaurants...
  20. artistsl
    I need to touch base with our neurologist at Mayo to see whether he tested homocysteine. Do you know whether that was performed through bloodwork? We traveled to Boston to enroll in a research study looking at genetics of schizophrenia. The doctor who enrolled us advised that we continue to go gluten free. The mechanisms are not understood, but the removal...
  21. artistsl
    Interesting. My son experiences neurological and psychiatric issues caused by gluten yet he tested negative for celiacs. He also tested negative for B vitamin deficiency. Despite testing negative for celiacs I decided to place him on a gluten and dairy free diet. His symptoms improved 95%. I started giving him B12 supplement despite testing negative for deficiency...
  22. artistsl
    In November of 2016, my four years old son suddenly began to suffer from severe keratosis pilaris, constipation, bloating, frequent burping, fatigue, insomnia, auditory and visual hallucinations, episodes of confusion, balance issues, strange finger posturing (steropathy), sensory processing difficulties and major personality changes. We travelled across...
  23. artistsl
    Yes, my 4 year old son experiences the same symptoms. All neurological in nature. The hallucinations, insomnia, strange finger posturing, etc go away when gluten is removed from his diet and come back when gluten is reintroduced into his diet. We are currently gluten free and living a normal life again (until he eats a handful of cheese its at school because...
  24. artistsl
    I'm interested in following this post as we are in the same boat pertaining to my 4 yo son. His presentation is purely neurological and manifests with a multitude of symptoms that affect cognition, motor, speech and more. The symptoms disappear when gluten is removed from his diet and reappear when gluten is introduced into his diet. We have seen two neurologists...
  25. artistsl
    I can't thank you all enough for everything. You wouldn't know whether there is any common medical treatments for this gluten ataxia such as immunotherapy (IVIG or plasmapheresis, steroids)?
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