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2 Months, But I'm Back

Kitt

By Kitt
in Coping with Celiac Disease

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Kitt Rookie
Kitt
Posted

Alrighty...was here a couple of months ago asking questions. Since then, I've learned a lot. Wow. What an experience. Swore I didn't want to have to learn to cook again at 59, but I'm doing it. And learning to live gluten free. Sheesh. Went gluten free for 6 weeks then splurged at great nephew's graduation party. Had a brownie and a couple of cookies. Had 2 slices of toast the following morning (that I considered to be more enjoyable then the brownie & cookies)and then pancakes for breakfast the last day. OMG. Talk about being dippy and miserable physically. Immediately went gluten free. But was told I should go off one more time. A double study I think he said. So I'm waiting for a special occasion to eat conservatively. Not going to pig out like I did the first time.

I've been lucky with avoiding cross contamination with hubby's toast or sandwiches. He's even eating what I eat and has cut back considerably on the bread. He claims he's declared the day "gluten free" several times a week. Of course, he really has very little choice if he wants to eat. But is enjoying the different dishes I throw together. Learning to appreciate spices.

Baking is still up in the air. I have a shelf of flours in my fridge and have attempted pancakes, batter for squash and zucchini and I think I found a good combo for my zucchini bread. It's actually scary trying to put together food and flours so they're tasty. Also, the pre-mix flours are terribly expensive so I prefer to combine my own with the exception of using Bisquick gluten-free. Their pancakes are much better then mine and I altered the recipe so they're on the lighter side and have less fat.

I've been encouraged to have saliva/blood screening to determine the extent of my allergies. Which would show sensitivities to everything, including spices and would rate the sensitivity from 1-5. So, if I'm not horribly sensitive that would mean I could indulge in something once in a while. Pricey and can't afford to do it but will hope I can trim a little from the budget here and there and get the scoop on everything. If I can feel a little better then I do now, gotta do it.

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Sammyj Apprentice
Sammyj
Posted

Me also!

Wish you the best!

ravenwoodglass Mentor
ravenwoodglass
Posted

Did your doctor do celiac panels or any other celiac testing on you? If he did and the results were positive why is he having you do another challenge? Your first one made you quite ill so has he given you a good reason why you should do this again? If he wants you to challenge gluten to test you need to eat gluten for at least 2 to 3 months for that to have any chance of positive tests and even then the tests may be negative.

As to the allergy testing, gluten items may not show positive on that because celiac is not an allergy. If you do have allergy testing done be aware that some of the things you show allergic to may resolve when you have been gluten free for a while and your immune system calms down.

Kitt Rookie
Kitt
Posted
  • Author

Me also!

Wish you the best!

Thank you and to you too. :)

Kitt Rookie
Kitt
Posted
  • Author

Hello Raven...

It was suggested to me to get off gluten by my doctor who is working with me for BHRT's. However, my therapist (shrink) said he suspected I was sensitive and suggested a year ago that I do the self-elimination testing. Didn't do it until the other doc flat out told me to get off gluten.

Though it was a self-elimination workup, therapist said I should do a second exposure. His reasoning is that he did an elimination then had oodles of tests done but came up negative for celiac. Then he had lab work done for allergies done and found his sensitivities to many things.

BHRT doc recommends seeing a nutritionist and having the testing done via saliva or blood. Therapist did blood. Either way, I can't afford it now. Scheduled for a colonoscopy in August, so will speak with GI prior to procedure.

It was a bit startling to read your info and realize how much of it I can relate to. Did you depression really disappear? I wouldn't know how to act if my depression went away as I have treatment resistant depression and can't anything for it.

Thanks for sharing. Love reading others' posts and getting educated.

ravenwoodglass Mentor
ravenwoodglass
Posted

Hello Raven...

It was suggested to me to get off gluten by my doctor who is working with me for BHRT's. However, my therapist (shrink) said he suspected I was sensitive and suggested a year ago that I do the self-elimination testing. Didn't do it until the other doc flat out told me to get off gluten.

Though it was a self-elimination workup, therapist said I should do a second exposure. His reasoning is that he did an elimination then had oodles of tests done but came up negative for celiac. Then he had lab work done for allergies done and found his sensitivities to many things.

BHRT doc recommends seeing a nutritionist and having the testing done via saliva or blood. Therapist did blood. Either way, I can't afford it now. Scheduled for a colonoscopy in August, so will speak with GI prior to procedure.

It was a bit startling to read your info and realize how much of it I can relate to. Did you depression really disappear? I wouldn't know how to act if my depression went away as I have treatment resistant depression and can't anything for it.

Thanks for sharing. Love reading others' posts and getting educated.

If your therapist did the elimination and then had blood work done for celiac he would have come up negative on the celiac testing. Even on a full gluten diet up to 30 percent of us are a false negative. You have to be actively eating gluten for the celiac panels to have any chance of a positive result.

If you are having a colonoscopy done you should ask them to do an endo at the same time to look for celiac. However if you are already off gluten the endo will be a false negative, and at times it can have the same false negative rates on gluten as the blood tests. However if you are gluten free and it relieves your issues you have an answer.

There is some research that is saying that folks that don't respond to antidepressants should be screened for celiac, but that needs to be done before they go gluten free. Celiac will not show up on allegy testing though.

I know what you mean about having the depression lift, my family says I am like a different person. Once I got through the withdrawl phase of healing, which for me took about 2 weeks, I became this calm, quietly happy person that I hadn't been since I was a small child. The only time I get depressed now is if I get glutened and then it lifts in about 24 hours. The doctors had tried many different meds but most made me worse not better. In the end we don't need a doctors permission to be gluten free and being gluten free will not affect the testing for anything other than celiac.

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