Is Your Gluten-free Diet Killing You?

Is Your Gluten-free Diet Killing You?

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Celiac.com Celiac Disease & Gluten-Free Diet Forum – All Activity

Glad to hear about the improvement! ?

I said I would keep some folks updated who were curious about my positive DGP combined IGA/IGG assay which has mostly been negative when separated in to IGA and IGG tests (except 2 extremely weak IGA’s).

I did 14 weeks of eating gluten and they retested the TTG and DGP (combined). TTG was again negative and DGP was pretty much exactly where it was 8 months ago. EMA was not done for some reason. The serology was done locally. The Boston folks said they would not do serology when I was there but await the biopsy.

The endoscopy which was done in Boston (6 samples taken) came back showing no villi blunting but an increase in intraepithelial lymphocytes. Not suggestive of active celiac disease but from what I read, lands on the Marsh 1 score. Slight increase in IEL’s can be caused by NSAIDS, SIBO, H. Pylori, and others. Now, first, I do not use a lot of NSAIDs but admittedly used them about a month ago for 7 days (1 in the morning and 1 in the evening) after a fall and some bruised ribs. Second, locally, they poorly ruled out SIBO. Even though the test was negative, the folks in Boston questioned the method used as not being the best. Last, H. Pylori was ruled out at least in the samples taken from the small intestine in August.

Going back to August, there was no mention of IEL’s on that biopsy but duodenitis (I assume, this would include an increase of IELs as well but hey, I am no doc or pathologist).

Anyway, resuming gluten did not seem to make me any sicker then I was before. Though admittedly, none of these symptoms started until my FIRST gluten eating for 6 weeks back in the fall/winter of 2015 so I am not sure I ever really felt better since then. I continue to get pressure and pain in upper right rib cage and feeling like my brain is being squeezed at times. Kind of makes you wish we had easy access to TTG 6.

During the hiatus of trying to get a diagnosis I was given one of Hashimoto’s 6 months ago by a local endo. Suspicious of a conversation I had with him, I set out trying to get another local endo which literally proved to take the last 6 months and counting with poor coordination of medical are, lost records, etc. So, while I was out of town getting the scope done in Boston, and enjoying all of the food the city has to offer, I tried to see if I could get in to an endo THERE to rule out Hashi’s. I did. And he did…in under 4 hours.

It was sort of comic relief in a way I guess.

I know people jump on the DGP thing, that it is an extremely accurate test, but I have already shared a study here showing potential low predictive value and have been informed of such by two celiac clinics in the United States. Not that it is a useless test by any means, but not heavily relied on by the celiac specialist community. The irony, is of course we thought we would wait for the biopsy and the pathology report literally says no evidence of active celiac, the presence of IELs is non-specific, and basically the findings should be correlated with serology.

LOL!!!

SO, either I have the very start of celiac disease with atypical symptoms OR I have a false positive DGP as many had in the recent Columbia University study, and some other disease process. Landing me in pretty much the same boat I was before I resumed eating gluten at the end of December. Only now I am 3 pounds heavier (hey, pasta and chocolate cake were all over Boston).

I have yet to have my follow up appointment scheduled to discuss the results with the specialist. I will keep everyone posted.

I also agreed to participate in a study where they took some blood and 4 additional biopsies. My doc is the one who is doing the study but I am not sure he will or can use those samples to take an additional look.

Anyway, I am frustrated and scared still that something else is going on but much calmer then I was months ago. But I now know how to have a scope done without vomiting as they did a great job listening to my concerns in Boston. They used only 1 med instead of 2 (had the 2nd on back up if needed )as well as pushed the anti-nausea meds prior to the scope. And they informed me of a couple of possible tests I could have done locally which was was a LMAO moment for me because one of them is a really easy test that is done often. Coincidentally, my local GI doc thinks I am nuts but ordered some 2 day scan for me with radioactivity to rule out a tumor practically no one ever gets. Nice of him to think of me, but a simple “lets see how your stomach is emptying” apparently was not a thought process there.

Anyway, I had a mini vacation out of it.

Update going in next week for xrays, The pus is gone now, it just drains clear fluid and blood now, no lancing just gets a tad bit of pressure pain and when I rub above the gums under my nose it just drains out that little spot that used to have the pimple like thing seems to be a duct for draining now. I have also incorporated using a hydrogen peroxide rinse twice a day, and using listerine a few days a day. Trying to contain and keep the bacteria in my mouth down for now.

Creamy Butternut and bacon soup
This soup is great for recovery. Older recipe I used to live on

1 chopped onion of choice (360g)
2 tbsp minced garlic 2-4 chopped Strips of turkey bacon (Vegan Version sub in 2-4tsp of liquid smoke if you wish to keep that smokey flavor or omit)
4 cups almond or cashew milk (use 2 cans coconut milk and 1 cup water for a richer version)
1 1/2 tbsp thai curry paste of choice
3 1/2 tsp powdered ginger or 3 tbsp minced fresh
dash of salt
2 1/2-3lbs butternut squash chopped (you can buy the pre cubed ones by the lb at walmart)
2tsp lime zest
2tbsp lime juice
3 tbsp PURE Maple syrup or agave
1 12-16oz package of frozen spinach

1. Saute the onion bacon, and garlic in a bit of oil in the bottom of the pot til soft and releasing a nice aroma (7-10mins)
2. Add the milk, curry paste, ginger, salt, squash, lime zest, lime juice, and syrup, and bring to a boil
3. Boil uncovered for 10-15mins til the squash is soft then turn off the heat
4. Either transfer to a blender or use a hand blender to puree it smooth.
5. Return to heat add the spinach bringing it back to a boil stirring it in.

This soup is great either hot or cold I like garnishing it with a bit extra crispy turkey bacon or almond cheese melted in.

Vegan Queso

10-12 rounds of eggplant, sliced 1/4-inch thick 1 whole egg plant
spray oil
1 1/2 cups unsweetened original almond milk (or milk of choice)
4-6 Tbsp nutritional yeast
1/2-1 tsp finely minced fresh garlic
1 to1 1/2 tsp cumin
1 1/2 tsp chili powder
1/4 cup chunky medium salsa, slightly drained

1. Slice your eggplant into thin rounds just under 1/2 inch (not quite 1/4 inch), then sprinkle both sides of the flesh with a little sea salt and arrange in a colander to help draw out some of the moisture and bitterness. Let set for 10-15 minutes, then rinse with cool water and thoroughly pat dry between two clean towels.
2. Preheat oven to high broil and place an oven rack near the top of the oven. Arrange the dried eggplant rounds on a baking sheet lightly spritzed with non-stick spray and spray both sides of the eggplant with a little more oil. Sprinkle with a very small amount of salt.
3. Broil on high for 2-3 minutes on each side, watching carefully as to not let them burn. Flip at the halfway point to ensure even cooking. Once the eggplant appears tender and both sides have golden brown color, remove from the oven and wrap loosely in foil to steam.
4. After a few minutes, unwrap and peel the eggplant skin away. It should come right off. If you pack your roasted eggplant into a 1-cup measuring cup, it will be 1 cup.
5. Place eggplant in a blender with the 1 1/2 cups almond milk, 4 Tbsp nutritional yeast, minced garlic, cumin, chili powder and blend on high until smooth and creamy. Taste and adjust seasonings as needed. I added a pinch more garlic and a little more nutritional yeast. To thin, add more almond milk.
6. Transfer to a small saucepan and warm over medium to medium heat until slightly thickened and bubbly ? about 5 minutes. The longer you go the thicker it will become. (Keep Stirring)
7. Once hot and thickened, remove from heat and stir in DRAINED salsa or Rotel. Don?t put the liquid in or it will make it runny. Pour into a serving dish and top with a little smoked paprika and hot sauce for flavor/color. (If it looks like it has little clumps in it you need to blend it more)

I have had success using both cashew and almond milks for this, I also found adding a tsp of flour like coconut helps with the thickening and richness.I personally like adding a bit of annatto or 2-3 pieces of sun dried tomato when blending to give it a deeper orange color. GOES GREAT with Roasted Orange or Red Bell Pepper

This dish was inspired by Baba ghanoush served at a small restaurant in Dallas.

(Why?)

Published at Thu, 20 Apr 2017 15:30:00 +0000

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