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New And Soooo Overwhelmed

Guest havetobestrong

By Guest havetobestrong
in Post Diagnosis, Recovery & Treatment of Celiac Disease

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Guest havetobestrong
Guest havetobestrong
Posted

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
Guest jhmom
Posted

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
lovegrov
Posted

Last I looked the gluten-free drug list was outdated and included at least a couple that company says have gluten, like Tums.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

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
Guest havetobestrong
Posted

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

  • 3 weeks later...
hapi2bgf Contributor
hapi2bgf
Posted

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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      Hi Ginger38,  Huge sympathies, so very hard to do alone. Are there any groups locally where you could meet others face to face to share your struggles and to encourage each other with diet? I'm a foodie too and love baking. I found it very hard facing the fact that I could never again eat homemade bread still warm from the oven or cakes or pastry. I tried a few gluten free recipes but they were pretty miserable by comparison and I gave up. Lately however I have gone back to it and am finding a few recipes which are pretty good to eat and enjoyable to make. . (For what its worth, I  think the secret is finding a good general purpose gluten free flour and embracing the use of xanthem gum) If you can find just one gluten free receipe you can make and enjoy, it might just help you break out of the struggle you are in?  Sometimes though, you simply have to ask for help to get you through the tough times...a friend, a neighbour, a doctor, a work colleague? I hope you find someone to help. Sue
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      I never felt that it was hard, gluten feels like a rock in my stomach and everyone else's.    Gluten free is probably not good enough. You need to be grain-free because we do cross react  the other proteins- how lovely. Quinoa is 99% similar to the protein in gluten. Period cramps cease on a grain free diet.  You can try Pamela's Baking mix, it really is GOOD and has almond flour in it. Whole Foods has Italian made, gluten pasta. I am 100% certain I react to most grain based on my brain function when I eat any grain.  You can safely have white rice and tapioca, I make pizza and bread rolls like Red Lobster from that combo. If you really want to know what is safe for you, you can use Dr Vojani's lab in Phoenix. Cyrex Labs. I think you need a celiac partner who is already gluten free to help you. Every time you cheat you are setting your immune system up for a six-month attack. 
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      I don't know how to even begin this or what topic to post this under, so feel free to move it if need be, but I just need a place where I can be honest and I need to vent to people who can relate and who can hopefully inspire me to get back on the right track with my life. This whole gluten / celiac/ testing etc has been nothing but an uphill battle and struggle for me since it began. When I went gluten free years back, it was the hardest thing I ever did, and I did it on my own without much help or guidance aside from this group. I am a foodie and a carb lover and a baker and having to give up so many foods that brought me so much happiness was so incredibly hard for me, but I eventually did it. Even when people encouraged me to have just a little or cheat here and there I didn't give in.  I have since developed uncontrolled diabetes which has complicated all this to say the very least, because none of the breads, flours or replacement foods, that actually taste semi good are diabetic friendly (at least not for me). So I have struggled with eating gluten off and on in the form of crackers and breads and low carb keto foods, even though I know I shouldn't. I do good for a while and then I completely lose control again and somehow justify it in my mind.  Inevitably because of my struggles, I was really concerned about going back on gluten (full time) for the gluten challenge, I mean it gave me an excuse to party hard, and be miserable while doing so, but I was afraid once I did that challenge for 8-10 weeks that I would never be able to give the gluten back up again. And that is exactly where I am sitting at as we speak. It has been an on again off again roller coaster ride of no gluten, gluten, little gluten, no gluten, lots of gluten etc.  I go from buying small loaves of bread and keto tortillas and buns to whole wheat buns and pasta - justifying it somewhat because it is better for my blood sugar issues and that is what is most important. I binge eat some of the foods and then I feel horribly guilty for eating it and then I end up throwing all the gluten food away in a desperate attempt to stop the madness. Then I restart the process all over again at some point.  My joints ache. My stomach is constantly sour. I walk around like I have terrible arthritis or something. My hands are swelling terribly, sometimes I can't even make a fist. I am experiencing numbness and tingling in my hands and weird things with numbness and tightness in my face as well. I am dropping things constantly. I am forgetting lots of things and struggle to recall things. I can't focus on my work. I am having nightmares. I am wanting to sleep all the time. I am bloated and sometimes have diarrhea and nausea, but then other times I am horribly constipated. My  post herpetic neuralgia issues from shingles are much worse now and overall I am just so irritable and angry and emotionally numb.   I know for some it is a simple choice, but I can't be alone in this struggle. Thanks for letting me getting all this out there. I hope someone can scare or encourage some sense into me. It is kind of insane what I do to myself. And I am just tired of dealing with all the food issues and health issues   
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