lynnelise

I understand the frustration this disease causes. You really need to try to find safe foods because keeping nourished is important. Larabars are always in my purse when I travel so I have a quick meal on the go. Fruits are handy and portable. Raw nuts. Minute microwave brown rice is gluten free and comes in single size cups, pair with tuna and a veggies and you can make a quick meal with minimal cooking. The crock-pot is a great resource. Just dump things in and at the end of the day you have a gluten free meal with very little effort!

Happy Birthday! I hope your day gets better!!!

((((lynnelise)))))

While is is a shock to get a diagnosis with something off with one's brain, I am happy that at least you seem to have a neurologist who is trying to diagnose you in a timely matter.

While I had good reason to believe that I did not have MS I was a little bit prepared to hear that possibility due to symptoms but this wasn't on my radar at all so it really did kind of shock me. Then the more I read, the more it seems the only relief for the neurological issues is decompression surgery which sounds pretty unpleasant. I'm just trying to go on as I have been until further testing and save the worry. No use stressing over something that may end up not being necessary!

I had my follow-up with the neurologist today. The MRI showed that I have a Chiari Malformation. The doctor still did the nerve conduction study as scheduled because he said a lot of the time Chiari malformation has no symptoms so he wanted to rule out carpal tunnel and pinched nerves as causes of my symptoms. Since those tests were fine that pretty much leaves Chiari as the cause of my issues. He ordered a second MRI concentrating on my C-spine to get a better idea of what we are dealing with before he makes any recommendations.

While I'm a little freaked out by what I'm reading about possible brain surgery, I'm not going to worry. In some ways I feel a lot better knowing that all these crazy symptoms do fall into the disorder. I'm so used to tests coming back normal and doctors acting like I am crazy or a hypochondriac. I'm also relieved that there were no signs of MS. The doctor says he feels 100% confident in completely ruling MS out!

Celiac disease isn't an allergy, it's an autoimmune disease. I honestly don't think this idea would work and while you may not exhibit symptoms right away you would probably end up with damaging inflammation. The best way to have your cake and eat it to is to buy gluten free cake mix! Pamela's and Betty Crocker are both good!

I love that Amy's mac and cheese. Maybe it's for the best that other people think it's "not real". If they discover it tastes better than the gluteny Kraft kind they may buy it up!

There are a few ladies at my work that inspect my lunch. They always crinkle their nose up and ask if it's good. I always wonder why they think I would bring it if I didn't like it? These women eat ramen noodles most days so I just remind myself that they are clearly not food people and their opinions are suspect! lol

I hear you. All those for me too ---AND an lyme disease specialist and environmental allergist.

Tongue burning can be caused by many things, I have read.

Hormonal shifts, allergies and intolerances, yeast infections, inflammation and vitamin deficiencies.

The best part is.... anyone who had it tells me it went away after a while gluten-free. So, do not give up hope!

Do you have burny sensations anywhere else?

I get these burning feelings like someone has put a match to my skin mostly on my lower back and legs. I get random tingly but not really burning spots all over my body, face, and scalp. My hands go completely numb a whole lot and part of my feet go numb. I also get a sensation that I can't really describe. It feels like the nerves in my legs are vibrating. It's not painful, just weird and it gets really bad when I get tired.

My tongue burns and goes tingly all the time! That actually didn't start until after I went gluten-free. Probably within the last year. I'll definitely report back after my follow-up.

I wish I had a little more faith that I'd get an answer but after seeing a rhuematologist, endocrinologist, and immunologist as well as a few GPs I'm kind of out of hope! lol

I like the Annie's with the pack of cheese sauce in it better than the powdered sauce. I also like the Amy's frozen mac and cheese with rice noodles.

So glad to have your input as I consider you guys to be two of the most helpful on the boards! I personally feel that the issues are probably caused by the years of undiagnosed celiac. I will print some stuff to show the doctor at my follow-up! My blood sugar has always been really good so I don't think that is the cause. I have been on the diet for almost 2 and half years so I may just need more time! Thanks for the encouragement and it helps to just know you aren't alone! Misery loves company I hear! Not that I want others to be in pain! I'd rather we were all feeling good with all nerves firing appropriately! lol

Yesterday I had a brain MRI due to continuing problems with parathesia, peripherial neuropathy, and extreme fatigue. These problems did start before diagnoses when I was deficient in B12. I have supplimented and my levels are now normal but not so high that too much B12 could be an issue. Could these problems be long-term damage from the deficiency and if so will that show on the MRI? I have also been diagnosed with recurrent/chronic mono and have had several attacks of shingles both of which I believe can affect nerves.

My neurologists does not think the issue is MS as the pattern of the symptoms is off but he ordered the MRI just to be certain. He also doesn't think it could be shingles because he says the nerve damage should be contained to the area of the attack.

So basically I'm just wondering what types of issues the MRI can show. Will it be helpful in showing long term damage from vitamin deficiency or can it only be used to rule out MS?

I am having another test next week but it is mainly checking for carpal tunnel.

I get the whole white bread is ok thing a lot. Also people tell me how good potato bread is and suggest I try it when all the varieties I see are a mix of wheat and potato. Some people just don't read ingredient labels. A lot of people just don't have an interest in learning about foods and make assumptions. I know for instance my brother-in-law avoided hummus for years because he had it mixed up with haggis. We had a good laugh explaining the difference to him. The other day at a cafe the "barista" tried to argue with me that cappuccinos and lattes were the same thing.

I bet! Poor guy! Thank goodness he found a source for real gluten-free!

I know a lady who has an autistic grandson on the gluten-free/CF diet and they give him potato bread exclusively. She was pretty alarmed when I suggested that it most likely wasn't gluten-free!

I get the whole white bread is ok thing a lot. Also people tell me how good potato bread is and suggest I try it when all the varieties I see are a mix of wheat and potato. Some people just don't read ingredient labels. A lot of people just don't have an interest in learning about foods and make assumptions. I know for instance my brother-in-law avoided hummus for years because he had it mixed up with haggis. We had a good laugh explaining the difference to him. The other day at a cafe the "barista" tried to argue with me that cappuccinos and lattes were the same thing.

Everyone seems to react a bit differently. For me I'd have D, bloating, joint aches, rashes, and worsening fatigue for the next few days. Others get constipated, anxious, depressed, heartburn, ect. Some people have no reaction other than internal damage.

Maybe add more fruits and non-gluten carbs to your diet in the coming weeks so this sort of thing doesn't happen again! I hope the aftermath isn't too bad and passes quick.

I don't get angry when people try to understand. I get angry when people like my inlaws say they "just can't keep up with what exactly gluten is" despite my explaining it 100 times. My husband even gets frustrated with them at the holidays because they literally make every side dish a casserole w/ ritz crackers and tell me I have to try it because it's just so good! They also like to make a point to sit beside me when they eat gluten filled desserts and make unbearable sounds of enjoyment that make it seem like they are starring in some sort of dirty movie.

When people say "can you eat this dish, it has blah, blah, blah in it" I have no problem. They are not being malicious or hurtful, only helpful. I don't mind when people unknowingly offer me something I can't have. It's just knowing and offering to spite.

My cousin recently began a vegan diet. She was coming to visit and seeing as this is a rural area w/ little awareness of such diets I did careful research to find places she could eat. When you care about someone and their well-being it's natural to do this sort of thing. I think most people get frustrated when people that are supposed to care won't take a few minutes to consider their needs.

haha, my fever went to 102.5 this morning. doctor said I need one week of bed rest.

I have one more question. the doc gave me antibiotics. usually when they give them to me, I don't take them, since they're over-prescribed, but in this case it is to prevent pneumonia, which I've had 3-5 times as a youngster (I forget) and DO NOT want again. So I'm taking them.

Should I take probiotics at the same time with the antibiotics, or should I wait until after the full course and then take them??

My doctor always advises I take it with the antibiotic!

You really need to sit down and have a talk with your husband about why he is acting this way. Celiac disease is a medical condition and it's not something to be embarrassed of. I can't understand why he doesn't want you to discuss it and gets upset when you do. Another factor is that it can be genetic so there is a chance your kids may inherit it and if so they too will need his understanding.

It sounds like his whole family needs educated on the illness. At the next party, I would insist on bringing my own food...that way people will see that you aren't dieting to lose weight. If someone is offended that you won't try their dish try asking if they'd treat someone allergic to nuts the same way for avoiding a dish? It's ridiculous to expect someone to harm their health to avoid hurt feelings. Tell your husband if he thinks just saying you have celiac is so bad just wait until you tell these food pushers EXACTLY what will happen to you if you eat gluten. Explain that if he won't let you tell them about your illness beforehand and he won't let you bring food you would have no choice but to explain in graphic detail why you are passing on a dish.

If your pots and pans are scratched then yes you should buy new. Definitely a new colander, toaster, and dish sponges. My house is 95% gluten free. For the most part if my family wants gluten they can eat it outside of the house. Occassionally my husband will buy a gluten snack but it's always in single serving containers and he is careful not to contaminate anything with it.

Good luck at the doctor! I'm late in seeing this post but I think I have had every single test for fatigue there is! Definitely request the complete thyroid panel, the ANA, SED rate, CRP, and rheumatoid factor in addition to checking vitamin levels and CBC. They can do a skin biopsy for lupus as well!

I know how awful unrelenting fatigue can be so I really hope they find an answer for your issues!!!

Most of my casseroles I stir in cream cheese instead of a can of soup. The gluten free cream soups are a bit too runny. Cream cheese mixed w/ a touch of broth and sauteed mushrooms works good. I second the recommendation above for crockpot365.blogspot.com. The Indian butter chicken is my favorite dinner ever! She has so many great recipes.

These are expensive but they make these Go Picnic boxed meals that would work. I keep them in the car for emergencies. Open Original Shared Link

Before diagnoses: B12 deficiency, IBS-D, non-functioning gallbladder (had it removed), gastritis, arthritis, DH.

After: Chronic mono, raynauds, having an upcoming appt regarding neuropathy.

Since going gluten free my gastritis, B12 deficiency, diarrhea, and DH have resolved. Arthritis pain has lessened.

I USED to say I am so glad I got to visit New Orleans before Katrina. Now I'm glad I went before being gluten/corn free. The food was absolutely the best I ever had!

This exactly! I love New Orleans more than any place I've visited!!! I know I could make the dishes at home but it's not the same as being there and having the experience of trying all the good restaurants. Celiac makes you lose a lot the carefree attitude that makes vacation fun.

So to answer the overall question I guess what I find hardest is the constant planning and the way an unexpected hurdle can throw everything off. Like today for instance. I got called into a meeting before I had a chance to eat my breakfast...well they served donuts so it was a really bad time to be hungry. Then things get intense and they decide to work through lunch and order food in....from a pizza place I'm unfamilar with. I was way too scared to chance a salad so I just said no thanks. So that made two meals I had to suffer through. Finally I snuck out for a restroom break and scarfed down a Larabar. Normal people don't worry about that...they just enjoy donuts and pizza on the company's dime!

Rum is made from distilled sugar cane so it is safe to drink!

This is VERY interesting. I HAVE decided to get back on the diet, but just not yet. And I am probably going to try to focus on whole foods in general, as opposed to the processed foods. I figure, if I'm going to diet for my health, I might as well go all the way. Processed foods can be something I eat as a treat or on rare occasions, but not as a regular thing. It might be a good time for a life-change. I just have to get to the point where I'm ready to do it.

As for the hysterectomy, my doc thinks that ablation has an "abysmal" success rate. If I had the option of taking hormones (can't due to the liver disease), then that would have been our first option, I'm sure. The ovaries will remain unless there is a medical need to remove them. I already have osteopenia and I can't take any hormone replacement, so it's in my best interest to keep them if at all possible.

Going to the dermatologist today for the shingles.

A co-worker had an ablasion in September and will be having a hysterectomy this Friday. The bleeding has already started again!

So glad to hear you are doing well!