lynnelise

On this site DH usually refers to dermatitis herpetiformis. Other sites it may be dear/darling husband. DD is daughter.

I spent a day in Belize as part of a cruise before going gluten-free. I really loved it there, it's so beautiful. It's nice to know that I'm able to go back and eat safely!

Sounds like you are having a gluten reaction for sure! I agree with the previous posts regarding fatigue. There is a good chance of vitamin deficiencies. I would stay very strict with the gluten free diet from now on! You should see improvements soon!

BTW, Love the cat picture!

I have been strictly gluten free for a year and a half. Before going gluten-free I had a lot of stomach issues (frequent big D, gastritis, acid reflux, persistant pain in left side, gallbladder removed as it was non-functioning, etc), low B12, DH, thinning hair, terrible immunity, unexplained bruising, and more. Most of these symptoms have cleared up since going gluten-free with the exception of poor immunity which may be improved slightly. I should mention that I had a bout with mono about 5-6 months before going gluten free. Prior to that I worked out 5 days a week. Weight lifting, kickboxing, yoga, and boot camp classes. I took time off exercising to deal with mono and started back up before going gluten-free but kept having setbacks. So after going gluten free I took several months off thinking my body needed time to heal. However I am now approaching two years and I'm still completely unable to exercise. Also while I suffered fatigue before going gluten-free it is now actually worse than before.

Here is my usual pattern...I start back with exercising. To clarify I start SLOW. Like light walks, easy weight lifting (5lbs. weights where I used to use 20!!!). Starting with only 15-20 minutes per day. This goes ok for maybe a week. Then randomly I wake up with swollen lymph nodes, sore throat, body aches, general "fluish" feeling. I've gone to the doctor during these flares and am always told it's a virus. No sign of flu or strep. So I rest from exercise. The fatigue will be so bad during the next two weeks that I will have to go to bed immediately after work. The kind of fatigue where your bones feel too heavy to move! When the symptoms pass I will take it easy for another week or so and they try to ease into working out a couple times a week and bam. Cycle starts all over again.

Last week I went on vacation and did a lot of walking. Came home and within three days had broken out with shingles. This is the 6th or 7th time I've had shingles (I am only 33 years old!!!). The doctor says based on my symptoms she suspects an immune deficiency or CFS. I have to go to an immunologist and get a full work-up!

Just for reference I have had my thyroid checked more times than I can count. TSH, T3, antibodies for Hashimoto's even. All negative. I have been checked for Lupus 3 different times (every new doctor I go to immediately asks if I've been tested for lupus). RA tests were negative as of 2 years ago. My last bloodwork showed my B12 is now higher than the reference range and iron is normal.

So I guess this long rambling post was asking does anyone have any idea if this sounds like CFS. Has anyone seen an immunologist? Is there anything I should ask to be checked for?

Thanks for any help!

I agree this girl doesn't sound like a true friend. I have never unfriended anyone on FB. One friend I did block updates on because she writes novels about her autistic son's various behavior issues, herbal remedies, special diet, and so on. I mean she will have a post and then fill about 3-4 comments on her own post because her updates are so long. I don't mind hearing whether or not her son had a good day or whether his new treatments are successful but she posts 10 paragraphs if he has a sniffle or a rash. So I guess what I'm saying is that it doesn't sound like your posts even came close to what my friend does and I didn't unfriend her so your "friend" has little excuse.

The real fun is eating a giant turkey leg while trying to look remotely ladylike!

Had to giggle at the old goat comment!

Glad you are feeling better! Hope your mom gets well soon and you enjoy your new job!

I survived my trip so I thought I'd post a quick update on the dining situation!

Upon arrival we had dinner at Tony Roma's. Due to traffic there was literally no other option but luckily the waitress was VERY familar with gluten-free! She said all the BBQ sauces are safe and the sides are all safe except the rice and those that go into the fryer. She made sure to point out that the green beans are cooked in the fryer! I ordered the chicken and ribs combo w/ steamed brocolli and mashed potatoes. No issues. Everyone loved their dinner!

We got groceries so I could eat breakfast in the cabin and have stuff for meals if nothing safe was available. Krogers on Wears Valley Rd. had a great selection of gluten-free items including Udi's bread AND Cookies!!!! The best chocolate chip cookies I have EVER had. I didn't even know they made them. I can't stress enough how good they were! lol!

The next night we went to Golden Corral which I know was a super risky move. I was traveling with my husband and parents and they really like this place. Their website has a listing of which bar items contain wheat so I used that to make selections. I also only picked items that were wheat free and were seperated from wheat containing items to reduce the risk of someone dropping something in or using the wrong spoon. I had salad, steak, corn, and ice cream. I even took a chance on a chocolate dipped macaroon cookie that was wheat free. No issues...I may have dodged a bullet there!

The next day was Dollywood. Their website has a listing of gluten-free items. I had a turkey leg from the Hickory BBQ place for lunch and a bunless burger from Red's for dinner. The staff was really great, they had a list of which restaurants had gluten-free offerings and at Red's I asked if the fries were in a dedicated fryer and the guy immediately asked if I had a gluten allergy because the fries are seasoned with a gluten containing seasoning and are not safe!!! He also yelled back to the kitchen that I had an allergy and to make sure to change gloves! All this without my asking! Very impressive! Did not get sick and was even able to ride the Mystery Mine after!

Our last night we ate at Bennett's Pit BBQ. There was some confusion with the waitress as she didn't seem to understand gluten. She said the sauces had ketchup so I couldn't eat them(maybe they were going by the old vinegar belief, not sure?). I told her ketchup usually doesn't have gluten so she went to the manager and got a laminated sheet that shows all the ingredients they use for everything. Turns out only one sauce was unsafe, the honey bbq because of wheat containing soy sauce. I ended up ordering the pork shoulder, corn on the cob, and a baked potato. As per their allergy sheet I asked for the potato uncut (they use a common knife to cut them otherwise). I used their house bbq sauce on the pork. Felt great after! No issues.

There were a lot of things I wanted to try but didn't get a change including Bubba Gump's which had a really good looking gluten-free menu and Mellow Mushroom which advertised their gluten-free crust pizza. I should be going back in November so I'm looking forward to these!

With fast food:

Chick-fil-a. So far I've never gotten sick from there! I usually get a bunless chicken sandwich w/ provolone cheese and fries.

Wendy's my locals have always been safe. I get bunless burgers and fries (check each location regarding whether there is a dedicated fryer) or the apple chicken salad.

Five Guys- bunless burger and fries

Chipotle- I always seek these out when I travel because we don't have one nearby and I am addicted to the carnita burrito bowls.

Sit down dining:

Chili's- hit or miss. I usually get the Margherita chicken as this is the one entree I haven't had issues with.

Outback- Never had a problem here with anything on the gluten-free menu.

Logan's- I usually get terrible heartburn here but I don't think it's gluten related as none of my usual symptoms are present. I get bunless burgers or ribs with steamed veggies and a salad.

Sushi- I usually do fine with the plain rolls. I love the philly roll and the king crab california. Make sure it's the real crab!!!

Red Lobster- Steamed crab legs, steamed veggies, and a baked potato. Also the New York Cheesecake has no crust and is delicious. Never gotten sick with this meal.

Ruby Tuesday- I've gotten bunless burgers and ribs without issues.

Work doesn't bother me. Like the above post said it's usually crappy store-bought cakes and $5 carry-out pizzas. I just make sure I bring something I love for lunch that day.

I do get annoyed at family events. I've been gluten-free for a year and half and we've gone over and over what I can and cannot eat, cross contamination, ect to NO avail. This weekend we were invited to my s-i-l for dinner and I brought green beans and gluten-free brownies. Well the turkey and my green beans were all I could eat at dinner. Every single other item was a casserole with flour or Ritz crackers. Some other guests asked why that was all I was eating so I said it's the only things I can eat and my s-i-l did a "oh no, I forgot you can't eat this stuff"...whatever. Then at dessert I got some ice cream with my brownie and then noticed a weird peachy color swirled in...my mother in law got a piece of peach cobbler and scooped ice cream with the same spoon. I didn't notice in time and spent the rest of the afternoon running back and forth to the bathroom. When we got home I just told my husband straight up that Easter dinner I was bringing all my own food in Tupperware because his family absolutely cannot be made to understand CC. I don't care who gets hurt feelings!

Sorry the chips made you sick!

The gluten free list on Frito Lay's website says it only pertains to products made and distributed in the U.S.

I haven't found any recent posts regarding this area so I thought I'd start a new one! My family will be renting a cabin in Pigeon Forge from the 16-20th. I wondered if anyone had any experience with gluten free dining in this area. I see some good possibilities online but I'd like some first hand accounts if possible! I will have a cabin with a kitchen so I know if all else fails I can eat all my meals in but I would really like to enjoy a few out!

Thanks!

I would never post a review unless I had actually eaten at the restaurant. I will say that when this first was posted I looked at their reviews on Trip Advisor and very few were flattering. This was before the "scandal" broke and none of them were from celiacs. Mostly along the lines of "used to love this place but it's gone way downhill" and "don't waste your money". So they can't 100% blame their shoddy reviews on the gluten free community!

Glad you've decided to become an active member! It's nice to have a place where everyone understand your issues!

I have TMJ and I do think it becomes worse with glutening. Last month it was so bad I had to take prednisone to bring the inflammation down. My face was going kind of numb where the swelling was pressing on nerves! It still doesn't feel 100% right, but it stopped hurting and the numbness is resolved.

I wish my daughter would try it. Her blood test was negative so the doctor doesn't think she needs further testing...gave her the IBS run around and said she probably just eats too much junk food.

So we go through an endless loop...she eats, she gets sick. She says she is going gluten-free. By the next meal she feels ok and decides it's too hard and the doctor said she is fine anyhow. Rinse and repeat!

I know what you are talking about so well. I have eaten a lot more ice cream since going gluten-free. I used to rarely eat it but now I get it in my mind that I "deserve" it because I can't eat this or that. Also I eat way more french fries than before. If I find somewhere with a dedicated fryer I feel I must take advantage of it! lol

Oh my goodness, who would've thought! I am so glad you finally found some answers! B12 is magic isn't it! When mine gets low I feel like a ballon that's been 90% deflated!

I was told you don't eat because the medicine makes some people nauseated and they don't want you throwing up during the procedure. Being backed up shouldn't be an issue as far as the test is concerned.

Blood tests are frequently false negative but rarely false positive. If your body was ok with gluten it wouldn't make antibodies to it regardless of the amount consumed. Your bloodwork indicates that your body sees gluten as an invader and is trying to fight it. If you keep eating it you may feel fine for awhile but eventually you'll see the results. Lots of people don't have noticable symptoms and by the time they discover the problem it's too late and they have cancer.

Not sure what locals stores are available in everyone's area but if you have a Kroger they label a lot of their foods gluten free and they have their brand of Chex that is really good. None of the yummy flavored ones though.

Cheap meals I eat a lot are:

Chicken legs with mashed potatoes or rice and veggies.

Bunless hot dogs w/ gluten-free baked beans.

Bunless burgers with oven baked fries.

Chili

Shepherd's Pie

Buritto bowls (rice, beans, meat, salsa, cheese, and so on. whatever toppings you prefer)

Grilled cheese made with corn tortillas and a gluten-free soup.

I use Udi's bread to make fried egg sandwiches. Serve w/ chips.

Breakfast for dinner. Omelettes, Frittatas, Quiches, scrambled eggs and bacon, etc.

In a lot of ways cooking gluten free is cheaper. I am eating things I used to cook anyhow but in the case of hot dogs or burgers I'm no longer buying buns! Also I save money because I don't try every new processed food that comes on the market.

Some of the comments on these articles are appalling! So many people seem to think this is just made up or an excuse to be picky or get better service. How crazy is that. First of all I LOVE to eat. One of my favorite parts of travel was to try different foods. Do these people think I like the idea that I will never have beignets in New Orleans again? Not to mention the other fabulous dishes that are started with a roux. No crabcakes in Baltimore. No cheesesteak in Philly? The list goes on and on! I also like the suggestion that we should just make our plain food at home and leave dining out to "normal" people. As if we don't deserve a meal out now and then? That's enough to raise a person's blood pressure!

I am so sorry to hear this! I have a cousin with MS so I know it's a hard diagnoses to deal with. Especially on your birthday. The good news is that doctors have a lot more options for treatment these days. I know it's hard but try to stay positive and reach out for support when you need it!

After going gluten free I developed a mild coffee allergy. It's been a year and half and I added coffee back regularly a few weeks ago with no reactions so far. Hopefully these issues will clear up once you heal! Sorry you are going through this. I love avocado too!

I'm sorry! I have days like that too! The longer I've been gluten-free the less it happens thank goodness! Could you make or buy gluten-free goodies and freeze them for emergencies like this in the future? I know this won't help now though.