angieInCA

I forgot to add I have very bad tingling in my hands, feet and lips/ tip of tongue.

Oh My Gosh, I also have tingling in my lips and tip of my tongue, also the tip of my tongue is now numb.. My tongue also swells and becomes rippled around the edges. (yes, I have been tested for many allergies). The swelling and rippeling usually happens with an anxiety attach and can last for several days. You are so far the only other person I have seen say they have the tingling mouth problem.

To answer other questions, yes, I have had my Vitamin D and B12 & B6 levels checked. All were low and I was diagnosed with pernicious amemia. I take B12 shots every 2 weeks and it in now in check. I also take 5000mg of D and also make sure I get 20 min of sun on my face and chest every day. 

I have removed dariy, soy, corn, HFCS, MSG, and several other things from my diet. I basically eat fresh fruit, vegetables and meat that I cook. I try to keep meals very simple. I also have added unfiltered apple cider vinegar (2 teaspoons a day) and raw unfiltered honey and cinnamon to my daily diet and I also drink cucumber and mint water every day.  I have seen a great improvement in some digestive issues that had developed.

Thanks every one for the conversation and replies.

Angie

Thanks for the responses.

Gemini, I have been gluten free with a clean diet and a gluten free kitchen (the whole family went gluten free in the house when I was diagnosed) since 2008, so it has been 5 years. I am very careful and I rarely get accidently glutened, but it does happen sometimes. That is one of the reasons the Doctors are surprised I was having increasing problems because they recommend going gluten free and I already am there. 

Actually Fibromyalgia is not considered an autoimmune disorder. The new research dictates that it is considered a neurological disorder where the regulatory cells in the palms of your hands malfunction causing the brain to start misfiring information to the nerves. here is a link to an article explaining it better.     Open Original Shared Link

The type of doctor you have to see with Fibro is a Rheumatologist because that is where it was first diagnosed when they found arthritis was not the culprit. It is no longer considered a throw away diagnosis that they give when they don't know what is wrong. My Rheumatologist has actually been great and when he diagnosed me he said "I am so sorry to tell you that you have Fibromyalgia because there is no cure but we can halt the progression and provide some relief with the right combination of treatment." I forgot to mention in my last post that along with the medication, I have been in physical therapy since September. I go 2 times a week and it has been a God send for relief. I get a 30 min. massage and 90 min. monitored exercise working on areas most affected.

The more research I do I believe it has more to do with hormomes and I believe I need to work with a Endocrinologist. I have thought for years that my thyroid is not functioning properly even though all of my tests keep coming back normal.  After reading the article that PricklyPear1971 posted above I believe I need to find a Neuroendocrinologist. Thank you for posting that article Pricklypear1971.

Hi all,

Over the last few years I've been having some deep muscle pain and tingling in my hands and feet. Around August of last year I started developing insomnia, debilitating exhaustion, agonizing nerve pain all over but especially in my hands and feet, an inability to regulate body temp and extreme myalgia pain all over my body to the point of having to use a cane to walk. I have also experienced brain fog, memory loss and sensory sensitivity to light, smells, noise and touch..... you name it, it creates pain for me.

In May, after seeing 6 different doctors, I was diagnosed with Fibromyalgia. I now have to take 4 different medications daily to try to get the nerve misfiring under control and to help me get some sleep. I also take pain meds every 6 hours and I have a stronger pain med for really bad days. In the last 2 months I have had to go to the hospital 3 times for morphine shots when the pain has become unbearable. I had to quit my job because I could no longer perform.

My question is, do any of you have Fibromyalgia or CFS? Were you diagnosed before or after celiac disease or gluten sensitivity? All of my Dr.'s were surprised to learn I have Celiac disease and don't seem to think there is a connection. I was wondering what your experience might be if you have both and if you have any pearls of wisdom.

Thanks

Angie

My sister and nephew were recently diagnosed with Fabry Disease. They were both tested for celiac some time ago and the results were negative but they were eating gluten light at the time. I will be tested for Fabry disease on Monday.

My sister and nephew has the same intestinal issues as a celiac and feel better when they are gluten free. We believe they are gluten intollerent and maybe have Celiac Disease.

My real question is has anybody seen or read about or have Fabry Disease in conjunction with Celiac Disease?

We have been researching but haven't found anything that really relates the two.

Any info would be appreciated.

I have to go to Las Vegas quite frequently for business (about 4 times a year). I have stayed at several different hotels from the main strip to the old strip. I have never had a bad experience. All of the resturants are pretty well versed in food "allergies" and gluten free. I find reaturants to be a bit easier than buffets. Don't hesitate to ask if they have Gluten free and egg free options. All resturants that I have eaten at that did not have a gluten free menu or options were more than willing to ask the chef to make anything I want to order. Examples: at small cafe in Flamingo made me a naked (sans bun)surloin burger with mushrooms and cheese with tomato, lettuce and onions on side (like a salad) and any sauce or dressing I wanted on the side at no extra charge. Mexican resturant at New York, New York double checked everything and helped me walk through the menu for tacos and enchiladas. Italian resturant at Rio made me a gluten-free eggplant "parmigana" made with rice and potato flour.

Best meal I ever had in Vegas was at Emeril's at MGM. Chef came to our table of 14 and took my order personally, ribeye, garlic potatoes and seasoned steamed veggies and then made me a special dessert of a gluten-free brownie and lavender ice cream (to die for}.

For gluten-free in Vegas it's easy, just speak up. They are very well versed in helping all types of diet issues.

BTW, I'm going to LV May 18-21 for the Hospitality Design Show.

If you cut your thigh down to the bone, had stitches, would you pull out the stitches after a few days? No, it would open up, not heal and possibly get infected.

Cheating by eating gluten is just like pulling out the stitches.

Wow! I love your analogy! May I have your permission to use this in the future?

My endoscopy would'lve been MONTHS down the road when my bloodwork came back showing possible celiac. I remember my dr looking at me and telling me I could not wait until August, I was so weak and sick, that she wanted me ot stop gluten and possibly dairy that day. I barely drove myself to the dr. I'd been in the ER with low potassium 3 times in the prior 3 months. It was a fluke that the rash I had was what confirmed Celiac. I still have people tell me that the only true diagnosis is endoscopy (which my dr begs to differ considering my DH rash confirmation). I tell them that I have a whole list of the changes in my life to prove it, I don't need an endo to make me feel worthy enough to eat "special".

A positive DH diagnosis is a Positive Celiac Diagnosis...period....

My blood tests came back very weak positive after being gluten-free for 6 weeks and my GI said it was possible I was just intollerent and we scheduled a endoscopy for a month later in which he wanted me to start eating large amounts of gluten for the test. The very next week I saw the dermatologist and got a DH diagnosis. Called the Gi and he said, "Well there you have it. You have celiac disease. No need for the endoscopy, we will cancel the test." "Now just follow the diet, it's a lifelong commitment".

I was not a big beer drinker before except for an occasional Guinness or one of the Sam Adams brews. I Like Redbridge!!! I never liked waterd down lite beers, I always liked beers that had full flavor so for me it's good

It is so interesting what your doc said about your body "clinging to every calorie consumed". My story is similar I was overweight as well...

..I also lived on 1200 calorie diet and had difficulty losing weight...and it was only when I went gluten free did my hunger hit...as I posted above...

"It was as if my body was trying to hold onto the the food forever...perhaps to squeeze every ounce of nutrients out of what I ate....I had no anemia....Today, being gluten-free for only 6 weeks...I can say that my body feels starving...I am so hungry...I feel like I can eat my own right arm"

My hunger now is beginning to level off...I think as my body realizes that it is going to be getting some good food...It does feel as though my metabolism is speeding up, or at least I sense it is....

I too was never hungry, would have to remind myself to eat. I was not anemic and regular blood testing showed nothing irregular. Yet nothing explained the terrible pain I was experiencing (constant migraines, debilitating back, leg and arm pain). Since diagnosis and more indepth testing it's been uncovered that I have Pernicious anemia and totally void of Vit D. I did know I have reactive hypoglycemia and hypokalemia which in themselves should have triggered something in the Dr's heads.

When I first went gluten-free I suddenly experienced hunger like never before. It calmed down after about 6 weeks of a strict gluten-free diet. And I basically stopped all grains (which meant all the baked goodies) for about 3 months then started reintroducing them. I don't drink soda (never did) except ocassionally. My addiction is pure clean cold water! AND HOT COFFEE (black)!!!!!!

I kept a food diary for 2 years and my regular Dr would just shake her head and at one point told me I was lying to myself and not writing down the truth of what I ate. I fired her and found a new Doc

I was one of those that had normal weight for most of my life until about 6 years ago. Suddenly i started putting on unexplained weight. The Dr's just said I was over 40 and it was to be expected. I lived on a diet. For over a year I lived on 1200 calories a day and gained 20 lbs. All told by the time I was diagnosed I was 50 lbs overweight.

My GI said that weight gain during undiagnoses is very common. He believes the body is in constant starvation mode and the metabolizm shuts down and the body clings to every calorie consumed. Since going gluten-free I have yoyoed with 20 lbs. I think my metabolizm is trying to wake up. I'm stabalized and not yoyoing anymore so hopefully I can start to see some weight loss. I still need to lose about 40 lbs.

I was the person who had a cold every 6 to 8 weeks. I caught everything coming and going. I would get a sinus infection 2 to 3 times a year and it would develope into bronchitis. I had the flu at least once if not twice a year. I've been gluten-free for just over a year and I don't remember the last time I was sick. I haven't taken an antibiotic in over 10 months. I may feel like I'm catching something for a day or two but I always seem to rally without actually geting sick.

My work is geting ready for their Holiday Feast that they have catered for our whole company (70 employees). The office manager came to me on Thursday and asked me to help with the Menu so she could make sure there were pleanty of Gluten free options. She had already contacted the caterer and they assured her they would be very careful and make sure the gluten-free foods were truly gluten-free and they would set up the food so that the gluten-free foods had their own table to help avoid cross contamination throught serving utinsils. The only food that will have gluten is the stuffing and most desserts. They said all gravies and sauces will be thickened with corn starch.

I offered to bring in a Gluten free cake and pumpkin muffins.

I just started working there in August and since I have been there 3 other employees have come and told me that they are gluten free due to health issues. They had never said anything to the bosses before but since i have made it known about my Celiac they felt free to let their conditions known.

The result has been that the owners of the company has decided to redo our kitchen/break room with a new counter and small fridge, toaster oven and microwave all to be designated Gluten Free

I am so glad to hear someone else had this experience and I love your boss's decree! Thank you so much for sharing. It really helps!

It helps that his son is Austic and Gluten free, he really understands the need to keep my work area clean. People walk around the office eating gluten stuff all the time and he tells them to keeep it away from my area.

I had my keyboard and mouse replaced with new at work and NO ONE is allowed to touch it by orders of my boss

My friend, who is a doctor, jokes that IBS stands for "I'm Basically Stumped".

OMG! That is exactly what I said to my Dr when he first threw out the possible IBS diagnosis to me before testing. He said' "It's probably just a case of IBS".

I said, "Doesn't that mean I'm Basically Stumped and just want to write a perscription?" and "Isn't IBS really just a symptom of something else really going on?"

He then said "I guess we could test for celiac disease". Duh! you think!!!!!!

One thing I want to add. I just hit my 1 year mark of being Gluten Free and I still have days where I find myself trying to navigate through this whole process. But I expect it will be that way the rest of my life. I just keep telling myself everytime I get glutened or I have a bad day that this will get better. And I continue to learn something new everyday, some days it's an adventure and some days it's just frustrating!

Are there any members who were as devastated as the most unhappy members here but who eventually calmed down and now just roll with the punches?

My earlier post talked of changing ones focus to help cope with the loss of gluten and favorite foods. This was a must for me.

My first trip to the grocery after my diagnosis (which was fastly approaching the 2 hour mark) ended with me having a total hysterical crying fit in the middle of the store and me walking away from my cart with just 3 things in it and leaving the store in a complete shattered mess that left me in a deep depression for 3 days.

I am a self-confessed control freak and this was something that I felt was completely out of my control! How dare Celiac Disease interfere into my life!!!!!!!! That is when I went to the Doctor looking for help with anxiety and depression and she suggested I take back control by changing my focus. Did it happen over night? NOT! But over a few weeks I realized being the control freak that I am that I could and did have control over this disease. I had to come to terms with the idea that Gluten was just a thing I had to live without and not let the old cravings and familiar tastes lure me into a place I didn't need to be. The mind and body is a powerful thing and when addicted it will make you want the one thing it craves. Ask anyone who has given up legal drugs like cigerettes or alcohol.

I confess I started feeling a bit better at the 4 week mark and really started to realize a hugh difference at the 8 week mark but it really didn't hit home till about the 6 month mark that I was feeling better than I had ever remembered feeling in my life. I realized my "you will be wheelchair bound within 3 years" diagnosis wasn't going to materialize. I started thanking God every day that my Celiac Disease wasn't Cancer, yet! BTW, I just hit my one year mark on 10/28.

It's damn hard! No one is saying it isn't. But with time it will get easier. For some it's a few weeks, for others it can take months.

As for food and baked goods not tasting like they are supposed to, I was an avid baker. I made amazing Breads, Cakes and Cookies and loved doing it. Does my baking taste the same now? No! But it is excellent and it tastes amazing but it does not taste like it's gluten counterpart. It just tastes different but it's still good. Actually my biscuits made with Pamela's mix is much better than my gluten biscuits ever were.

Now, with that said, I am off to bake an amazing Gluten free Carrot cake complete with Cream cheese frosting.

I make cereal bars with Fruty Pebbles or any of the gluten-free Rice Chex and marshmellows. Just follow the recipe on the marshmellow bag. I add chocolate chips and chopped almonds. So far the Cinnamon and Chocolate Rice Chex have been the favorites in my house. I'm not sure if the Peanut butter chips are gluten-free but they would be great with chocolate chips and the Chocolate Rice Chex.

The best advice I ever received was from my internist after my diagnosis. She said I needed to realize that I was going through a life changing event much like a death of a loved one. That I would go through the 7 stages af grief and the best thing for me was to recognize this and embrace it and allow myself to go through it. She also suggested that I start a list of all food I could eat and focus on that list. Not to focus on the things I can't eat. This has been a great help for me.

I found resturants I could eat at and what was safe on their menu. That way when I do go out the overwhelming decision of what can I eat is eliminated. When I shop I focus on what I can have and not what I can't have. This is hugh for me. In the beginning I was overwhelmed but changing my focus really reduced my stress. Now when I have a craving for an old favorite I figure out what I can substitute to satify that craving.

As for not having time to cook.....On Sunday afternoons I bake or grill a bunch of chicken breasts to take for lunch all week long or for a quick dinner when I don't have time to cook dinner. I just add some quick frozen veggies and rice or beans. Or I make a salad with chopped chicken on top. My crock pot has become my new best friend. A cheap cut of meat simmering all day with some Liptons Onion soup mix makes a great meal. Also Tacos are a great fast meal. If you are really short on time just make all the fixings and make a Taco salad with gluten-free corn chips.

Lucky for me I have In-N-Out Burger that makes a great Protien Burger (no bun wrpped in lettuce leaves) and gluten-free fries for those burger cravings. Other resturants do it too, you just have to plan and ask.

Yes, feeling depressed and overwhelmed is natural but changing your focus can greatly change that.

My full sized Yorkie went grain free about 2 months ago. I figured it was a no brainer since I was the one feeding him and giving him treats.

Murphy is 14 and weighs about 15 lbs and has always had skin/itching issues. Within in 2 weeks all the itchingness was gone and he is more calm but now has the attitude and energy of a 2 yo pup.

I am currently using the Wellness brand Complete which is grain free. And his treats are dried chicken breast discs. Since the food is now protien based he eats half as much as he used to. Where he used to eat a cup a day he now only wants to eat about a half a cup a day.

Be careful about buying too big of a bag because if you don't use it up in a timely manner the food can go rancid since it has so much protien. I bought the large bag and then put half of it in a large lastic container and keep it in the garage freezer till needed. I scoup out about a weeks worth at a time and keep it in a sealed container in the Kitchen.

So here's how things are now with his arm.

It never really broke out or anything, that I could see. But his arm is still very dark in that patch, and I noticed it felt much rougher than the rest of his skin. But, he said it didn't hurt and it doesn't look like he was scratching it. So, today I noticed that that patch of his skin on his arm is peeling. Mine and my husband's just faded away. That area of my skin feels slightly drier than the rest, but it's not peeling.

Any thoughts on that? His rash actually seems to be clearing up. Maybe we've escaped for now.

This sounds very much like my last reaction to the iodine test. The (what I called a large patch of tiny blisters) area was about the size of a nickle because I only did a small bandage. The blisters were microscopic but scabed over quickly then when completely dried out it peeled off much like I had burned myself.

If it was not hurting or itching it might be a bit of a chemical burn but I'm not sure how often people experience a chemical burn from iodine.

My blood tests came back in the negative to low positive range. My DH test was positive. I opted not to have the GI biopsy...no need. Positive DH test confirms Celiac Disease.

Fried Green Tomatoes has always been one of my favorites!

Slice tomatoes thick (At least 1/2 inch)

Dip in beaten egg

Then dredge in cornmeal mixed wih a little cornstarch

then dip in milk (can use almond milk)

then dredge in corn meal again.

Fry in deep lard (can use veg. shorting) that come at least half way up the sides.

cook till lightly brown

turn once and cook till lightly brown on other side

remove and drain on a paper towel till cool enough to eat.

yummy

I have to wonder how many folks with DH have been give a herpes diagnosis just by sight and given meds for it when it was really DH the doctors were looking at.

I was told for years I had Herpes even though all tests came back negative for any know Herpes virus. I knew I didn't have it and kept seeking Dr. after Dr. opinions. Took me doing the research and calling till I found a Dr who knew what DH was and how to test for it.

Your body is talking to you. Listen to it. Going gluten free is hard and your body doesn't rid itself of all the toxins over night. It takes weeks to get your body adjusted to the fact it's not going to get poisoned anymore. While your gut is healing you need to give it simple easy to digest foods. It will make it so much easier on your body. Doesn't mean you can't have flavor or variety but don't over do it, especially all in one meal. And you may find you are intollerent to other foods during the healing process which you can add back into your diet later as your digestive system becomes stronger.