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Hello

ClevelandGuy

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ClevelandGuy Rookie
ClevelandGuy
Posted

Hi everyone,

I've been lurking silently for a month or so, soaking up lots of good knowledge from everyone. I have a typical chronic disease story- lots of varied and perplexing symptoms stretching back 18 years. Out of sheer frustration, and having felt that I'd reached the end of my rope, I decided to post an SOS of sorts in the form of an anonymous blog. My story is Open Original Shared Link.

Based on several responses to my blog urging me to get tested for Celiac, I decided to investigate that. My first bloodwork results showed a fairly unremarkable TTg of 20 (i.e. weakly positive), and was negative on the Gliadin IGG and IGA (copies of the labs are linked from my blog.) I decided to try the wheat-free diet anyway, and noticed a remarkable improvement in digestion the next day, and also after a few days an improvement in fatigue. This lasted for about 5 days- best 5 days in a row I've had in years.

So I went to a gastroenterologist who repeated the bloodwork, and the TTg came back strongly positive at 66. Based on these results, she scheduled me for a biopsy. This meant going back on wheat, which I did for a period of three weeks. My fatigue and general malaise returned rapidly, though I cannot say for sure that it was due to the wheat, as it seemed to return 2 days prior to resuming wheat. It's so frustrating not being able to figure out cause and effect.

After 3 weeks back on wheat, I had the endoscopy and colonoscopy done. I got the results back, and they were normal- i.e. not Celiac. I asked the doctor what her opinion was, and she said that she honestly didn't know what to think, since the bloodwork was so strongly positive. In the end, I decided to try the gluten-free diet for a few months and see if it helps. So far this is week two being gluten-free, and if anything I think I feel a little worse. It's very discouraging, but I'm trying to hang in there. I really hope something changes soon, since I'm in danger of losing my job.

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ravenwoodglass Mentor
ravenwoodglass
Posted

You mention eliminating wheat, you have eliminated barley and rye also correct? What are you typically eating? In the beginning it is best to stick with whole fresh or single ingredient frozen foods. You need a new dedicated gluten-free toaster, to replace scratched cookware and colanders and wooden utensils.

With that high of a TTG you are doing the right thing by giving the diet a good strict trial for a couple of months. You also should eliminate or strictly restrict your dairy intake until you are feeling better. It can take a while to heal so try to be patient. Do be sure to check any meds or supplements you take, OTC or script for gluten. Avoid barley and wheat grass in supplements, they can be a problem.

Ask any questions you need to and be sure to read as much as you can here. I hope your feeling better soon.

ClevelandGuy Rookie
ClevelandGuy
Posted
  • Author

You mention eliminating wheat, you have eliminated barley and rye also correct? What are you typically eating?

Hi raven, thanks for your reply. I'm making all my own meals, more or less from scratch. For breakfast I'm having gluten-free RiceChex or CornChex with some milk. Lunch and dinner are usually some kind of meat (beef, chicken) cooked on the grill, some steamed veggies, and a small amount of white rice or potatoes. No barley or oats. Today was tuna.

Toaster? I can't even fathom what kind of gluten-free food might need to go into a toaster... no bread for me. We have no wooden utensils. I take thyroid meds, and the pharmacy has assured me that they are gluten-free.

I know it's a good idea to give up dairy, but it's very hard to face the prospect of breakfast without either milk in my gluten-free cereal, or a little Stonyfield Farms yogurt. I adore muffins and breads of all kind, so breakfast is really the hardest meal for me to face on the gluten-free diet. Easy-to-make breakfast ideas greatly welcomed.

For snacks, I allow myself a little Haagen Daaz "Five Ingredient" Vanilla Ice cream now and then. I've also been eating strawberries and some very good chocolate covered frozen bananas ("Diana's Bananas", I believe).

Thanks again for your reply.

ravenwoodglass Mentor
ravenwoodglass
Posted

It sounds like your doing what you need to do. One thing I didn't mention before was withdrawl. Many of us do go through it. It can make us feel down, irritable and quite out of sorts. You may want to try some sublingual B12 for a bit and see if that helps. Many of us benefit from supplementing with that. There are also a lot of us who deal with ups and downs symptom wise for a bit after we go gluten free. Hang in there and hopefully you will feel better soon.

ClevelandGuy Rookie
ClevelandGuy
Posted
  • Author

It sounds like your doing what you need to do. One thing I didn't mention before was withdrawl. Many of us do go through it. It can make us feel down, irritable and quite out of sorts.

Yeah, I was wondering about the gluten-withdrawal. It would be a lot easier to take if I had a solid diagnosis; then I'd know it was just a matter of time. The hard part is being unsure, and having to wait.

Thanks Raven.

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