AnniesVision

On September 24, 2013 at 9:52 AM, ms_issippi said:

I met with my neurologist for a follow-up and had a very frustrating visit. He went over the notes from the neurosurgeon and, after basically accusing me of lying because he had written information down incorrectly, said that the surgeon didn't think I have trigeminal neuralgia, but rather some for of atypical facial pain or migraine disorder. Which is not what the surgeon told me - like I wrote above, he said it was the atypical presentation of TN. The neurologist also said there wasn't anything else that could be done besides medication, which I've since learned isn't actually true, but since I didn't want to keep trying new meds (I've been through three with a fourth sitting in my bathroom unopened), we agreed I'd just come back in a year for my refill appointment. This doctor came highly recommended, but it's clearly not a good fit. In an odd coincidence, the nurse practitioner at my GI's office actually told me she'd fired this same neurosurgeon because of the way he treated her mother after a stroke.  

I am just going to throw a question out there. Since I believe in starting with small interventions and building tonight if you must, have you thought of seeing a good naturopath? I am a retired RN so eastern sorts of medicine was so foreign to me. However, if you have a really good naturopath, it is truly amazing the positive results you can receive from treatment. They don't just treat the symptoms, they address the problem. 

I am guessing tou were out on Carbamazepine or Tegretol. Because those of us with celiac disease also seems to be more food sensitive and drug sensitive, you are smart to be concerned about the meds. Tegretol can have some nasty side effects. I understand that some people out there most take it, and of course support anything anyone must do. However, if you have options, like seeing a naturopath, I sure would recommend you give that a try. 

Best of care to you!

katy

On August 24, 2013 at 10:24 AM, ms_issippi said:

I was diagnosed with celiac disease via biopsy last October. I began a gluten-free diet immediately, but did not notice significant changes in how I felt overall. This past April, after two episodes of sharp, intermittent pain on one side of my head, I was diagnosed with trigeminal neuralgia. No obvious physical causes were found - no tumor or MS on the MRI -  so I began taking anti-seizure medication to treat it. Three prescriptions later, we haven't been able to find a drug that works consistently without unacceptable side effects, so my next stop is a consultation with a neurosurgeon. 

 

Before brain surgery, though, I thought I should go back to my GI and make sure I had the celiac issues under control. They ran a whole mess of bloodwork, for celiac and other autoimmune issues (haven't gotten results back yet), but when I mentioned the connection between trigeminal neuralgia and celiac, the GI said he wasn't aware of/hadn't seen any evidence that those two things could be related. This seems to be in conflict with the information I've seen about celiac neuropathy, but I wondered if I was making an incorrect jump from that to TN. 

 

In short, neither my neurologist nor my GI seems to feel that there's a connection between my gut and my head, but I tend to disagree. Who's right, and if it's me, how do I make my case?

I believe that you are right. I went decades with undiagnosed celiac disease and leaky gut sets anyone up for an auto immune response. The body is confused (and my mind) and therefore, odd problems pop up that you most likely would not have had without first having celiac disease. 

When I rec'd the diagnosis of celiac disease, I thought "Yippee..everything will be just fine now". Granted, I was better minus gluten in my body, but had no clue that other problems were to come. 

Trigeminal Neuralgia is not for wimps!

Best wishes to you.. and to all of us brave souls that balance these issues daily!

I do get twitching in my face. It is ESP around my left eye, which is the side that is most affected by Trigeminal Neuralgia. When I have a TN flare up (can't tell you how much I dislike them), my joints ache, my L ear hurts, my upper lip feels slightly numb, my vision is blurred in my L eye.. I feel like I have the flu. It does put me in bed and turns me into a very unpleasant person to be around. There! I admitted it..

Hello to all..

Just wanted to add that all Elf Makeup products are gluten free. Also they are do unbelievably cheap. I discovered this line if makeup when my granddaughter was wanting to learn to apply makeup correctly. I took her to KMart and bought everything she needed, all made by Elf because of the price. Their items are usually $3 each. I was shocked at the variety and the quality. I could not believe they were also gluten-free! I only wear Elf products now. It has saved me a great deal of money and time since I don't have to get foundation by one manufacturer and mascara by another.

Hope this helps some.

Oh, I live in Oregon and we have a lot if wineries here. I have been told that white wine is gluten free but many red wines are not. The reason being is that flour paste is used in many of the wine wine barrels as a glue. The white wine is in a metal container.

This is a wonderful forum... bless us all!

Hello to everyone. It is so wonderful to have this format to share important information collectively.

I am surprised at how many Celiacs are not concerned about gluten contact on your skin. Our skin absorbs whatever sits on it (within reason) which is why many medication are given topically.

I am very gluten sensitive so perhaps that is why I have had to learn to be so very cautious. When I was relatively new at this, I dyed my hair at home without giving it a second thought. Because I had been gluten free for a couple if years, I had an awful reaction to the gluten containing hair product that I used. I sat there for 40 minutes with wheat protein sitting on my scalp. About a week later, my head itched like I had ants biting me. I had no skin sores at all, just itching. Within a month, I developed a rash down my back that scanned over like chicken pox. It took months for it to go away. However, the worst part was it threw my body into an autoimmune response. My lymph nodes ached, arthritis flared, systemic yeast was relentless, fatigue, depression and irritability was back. It took almost 6 months to get my body back to feeling healthy again.

You never know what can cause you to become really ill or have a serious reaction. Gluten shut my pituitary gland down. It is nothing to play with or take lightly.

I have a no gluten policy because I must in order to feel healthy. We all know what a pain it can be and also the extra expense. But having had 6 months of feeling as ill as I had while on gluten, I learned my lesson hard.

Nothing touches my body unless I am certain it is gluten free. This even includes laundry soap. It is not worth it. Gluten can shut your adrenal glands down and can wreck your immune system and cause chronic depression and cancer. We all need to be careful...always.

It is good to see (from reading the threads) that there are some gluten free hair dyes out there. I also like to make a quick call to the manufacturer to make certain the information is current. I keep a list on my phone of what I CAN have. If it is not on the list, it doesn't belong in me.

I hope all of you that are new to this will realize that your skin will absorb gluten. Be careful with your bodies. We only get one..

Blessings to all and thank you for all if the wonderful info I have gathered from this site.

Katy

Hi there.. I think the most important issue here is for you to not be too hard on yourself! There is so much to learn but you will learn it. I made choices in the beginning that I would not make now. That comes with knowledge.

Cross contamination is a big one for me. My friends can't understand why I won't go eat at a restuarant that has a gluten free menu. They think I am too paranoid. However, 9 times out of 10, I leave knowing I rec'd traces of gluten. They go back to their lives and I go to bed.

I live in Portland OR and we have many grocery stores that cater to healthier foods. These stores carry gluten free pizza and other rare products. Even my grocery chain has gluten free pizza crust so that all you have to do is throw on your topics of choice.

Hang in there! It really does get easier. However, I must admit that it has been life altering in many, many positive ways and a few not so positive. Eating out with friends on the spur of the moment is only a memory.