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Going gluten-free


chrissy

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chrissy Collaborator

i finally took the plunge and have gone gluten free with my kids. today is day 4 for me. i don't know about my meds yet, though. i still have to call and check on them. i would love it if going gluten-free could make enough of a difference that i could quit taking alot of my meds. i wish i could say that i was miraculously feeling better already, but time will tell.

christine

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Rusla Enthusiast

I am sure you are on the right step. Are you the one with the stubborn son? If so, has he come around yet?

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Becky6 Enthusiast

I started to notice little things after a few days. Like after 2 days I realized that my stomach was a lot quieter than usual. And within 2 weeks I could not believe how badly my stomach had hurt everyday! My neuropathy took 2-3 weeks to subside a bit as well as for the joint pain. I hope this is the answer to you feeling better!!

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penguin Community Regular

It's a lot like a toothache, you don't realize how much it hurts until it's gone...

...and then you do something dumb and it reminds you that, dangit that hurt! :rolleyes:

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celiacsmom Rookie

Good for you! You can do it & I'm sure you'll be feeling great soon!

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chrissy Collaborator

yep, i'm the one with the stubborn son. once i get my family in the celiac study, he is willing to get tested since it won't be costing him anything.

christine

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heli Newbie

Most meds are gluten free these days, however many are bound with cornstarch and corn is in the same grass family as wheat, barley, rye. I personally have a huge reaction to all corn products. But to encourage you, over about 14 months I was able to eliminate all 12 daily medications.

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2Boys4Me Enthusiast
yep, i'm the one with the stubborn son. once i get my family in the celiac study, he is willing to get tested since it won't be costing him anything.

christine

What study? Can you give us more info?

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chrissy Collaborator

it is a study on celiac at the university of california, irvine. it is open to families with 2 or more members diagnosed with celiac or DH by either biopsy, positive Ttg, EMA, or positive skin biopsy. i found a link to the study from a post on this board----but i can't remember who posted it, or what the thread was about. the woman i have been in contact with is maryam mousavi. they will do antibody testing and gene testing on our immediate family, and, if i understood correctly, they will test other family members that show symptoms. we have 4 older children that have not been tested yet, so it will be great to be able to not have to "convince" them to go pay to test for a disease they may or may not have. if you live in utah or california, they will have someone come to your home to draw blood. we live in idaho, so they will send us a kit to take to our hospital or dr's office to have blood drawn. kevin and i both come from larger families, and our children are "your's, mine, and our's" so i will be interested to see which of us (or both) carry the gene for celiac. our 3 children with celiac are children we have had together. another interesting thing that might come in to play-------when i was looking at some geneology, i discovered that quite a few generations back, (in germany) our family lines cross. weird, huh?----especially since he was born in idaho and i was born in louisiana---what are the chances?!

christine

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      Thank you again for your reply and comments which I have read carefully as I appreciate any input at this stage. I'm tending to listen to what my body wants me to do, having been in agony for many years any respite has been welcome and avoiding all wheat and lactose has thankfully brought this.  When in pain before I was seen by a number of gynacologists as I had 22 fibroids and had an operation 13 years ago to shrink them . However the pain remained and intensified to the point over the years where I began passing out. I was in and out of a&e during covid when waiting rooms where empty. My present diet is the only thing that's given me any hope for the future. As I say I had never heard of celiac disease before starting so I guess had this not come up in a conversation I would just have carried on. It was the swollen lymph node that sent me to a boots pharmacist who immediately sent me to a&e where a Dr asked questions prescribed antibiotics and then back to my GP. I'm now waiting for my hospital appointment . Hope this answers your question. I found out more about the disease because I googled something I wouldn't normally do, it did shed light on the disease but I also read some things that this disease can do. On good days I actually hope I haven't got this but on further investigation my mother's side of the family all Celtic have had various problems 're stomach pain my poor grandmother cried in pain as did her sister whilst two of her brother's survived WW2 but died from ulcers put down to stress of fighting.  Wishing you well with your recovery.  Many thanks  
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    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
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