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Guest havetobestrong

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Guest havetobestrong

Hello,

This is my first post. I was told today that I have gluton intolerance/Celiac. Sorry if I don't know exactly how to say all of this. I'm just a bit overwhelmed. I have not had a biopsy, but my bloodwork came back positive. I have a very long family history of autoimmune disorders. I've also been diagnosed with Fibromyalgia, probable Lupus, Epilepsy, and dermatitis (along with about a zillion gastrointestinal issues). When my bloodwork came back positive, my doctor decided to go ahead and put me on the Celiac diet. I look at it all, and it just seems like so much. How do you all make sure you don't eat gluton? How do you know what medicines it is in? Does soap and toothpaste matter? I'm sorry if these questions sound silly...I just don't have a clue where to start. My doctor is getting me a packet of information together, but he also told me to look on-line at these type sites. thank you for reading and helping. -Jenny


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Guest jhmom

Hi Jenny and Welcome!!! B)

The Gluten Free diet is something to get use to and it seems a bit overwhleming at first but it does get easier especially when you see / feel an improvement in your health! :D You hang in there and feel free to ask questions, this is a great place for support and encouragement!

I too may have Lupus (currently being tested and treated) and seem to have more GI probs than most people but I'm hanging in there and hoping I will feel 100% better soon. ;)

Here are some helpful links that will answer some of your questions below and help you gain more knowledge of this disease:

Open Original Shared Link

Open Original Shared Link

Safe & Forbidden Food & Ingredient Lists for Gluten-Free Diets

Mainstream Products that are Gluten-Free

Open Original Shared Link

Research on Diseases and Disorders Associated with Celiac Disease

Take care and God Bless :rolleyes:

lovegrov Collaborator

Last I looked the gluten-free drug list was outdated and included at least a couple that company says have gluten, like Tums.

richard

dana-g Newbie

I've had a lot of success putting the name of a drug together with the word gluten in quotes into google: "drug name gluten"

Guest havetobestrong

Thank you for your information! There is a lot to think about! -Jenny

  • 3 weeks later...
hapi2bgf Contributor

I started out by eating only home made meals. Fresh meat, plain rice or baked potato, fresh fruit. McCormicks 100 % seasonings are safe. Meaning the Basil or the Oragano are safe but check the mixed seasoning like SantaFe etc.

Make a list of all of the products in your house that do not clearly contain wheat and call the manufacturer to find out if it is safe. Go through and mark every bottle or box "gluten-free" or "Not gluten-free" based on the label or phone call. Personally, I think calling and asking is the easiest way to go. Get a list of the unexpected items to look out for and learn the trigger words like natural flavorings etc.

The diet is labor intensive at first, but soon you will have clearly marked gluten-free items throughout your house and then you will not feel so overwhelmed.

CSA/USA and Clan Thompson also sell product lists that you may find helpful.

Good luck.

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      I’m sorry you’re going through all of this. It sounds very stressful, especially when you feel that your symptoms are not being taken seriously. Until you are seen next week, it may help to keep the focus very practical: take clear photos of the skin sores, write down a timeline of symptoms, list all medicines, eye drops, supplements, implants/leak history, and any test results, and bring that to the dermatologist. If there is drainage, spreading redness, fever, worsening pain, eye involvement, or signs of infection, that needs prompt medical care. I would be cautious about assuming parasites or staph without testing, and also cautious with new supplements or putting vitamin C directly on sores, since irritated skin can get worse. A dermatologist can culture lesions, biopsy if needed, and refer to infectious disease if the findings point that way. On the celiac side, I understand your concern for your son, but being HLA-DQ2 positive does not by itself mean he has celiac disease; it means he has a genetic risk. If he is eating gluten now, this is actually the best time for proper celiac blood testing before he tries a gluten-free diet. His symptoms, weight, congestion, and family history are worth discussing with a gastroenterologist, but he should not be told he has celiac based only on HLA status. For your own care, try to keep pushing for objective testing and clear documentation in your records, because that is often what gets doctors to take the next step.
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