ShayFL

B vitamins have not helped my neuropathy. I take them everyday (not more than 100 B6), full spectrum and 10000 B12). Have been for a year. I have recently discovered (last 4 months) that I am severely deficient in Vitamin D and I have very low Ferritin (Iron). Both of these can contribute to neuropathy. So under my doctor's supervision, I am now taking 5000 IU Vit. D a day and 200 Iron.

I am hopeful that one of these will be the key. I was taking 1/2 the amount of Vit. D and no iron for the last 4 months. I only got my Vit. D a little. A long way to go to be optimal.

And even with symptoms, I found both Endocrinologists I saw COMPLETELY USELESS. Worse than regular doctors by far. When I was extremely hypthyroid and went to one, he said my labs were "normal" so I was fine. It was just stress. When I asked him why my body temperature was not even 97. He said you run cold. If you are every 98.6 then consider yourself to have a fever. I will not see one again. My doctor now knows more about our endocrine glands than those so called "specialists". My 2 cents....

My god. I just dont let them cut me anymore. I had laparoscopy too in my 20's. Adhesions were causing my pain, but they expected endo cuz of family history. I had appendecomy, tonsilectomy, molars surgically removed. When my gyno wanted to mutilate my cervix, I drew the line. Im done with cut and burn therapy.

Shannon...could you have picked up a bug?

I get a lot of recipes FREE from Bob's. And I dont know why more dont mention it here:

Open Original Shared Link

Everything I have tried from his site has been good so far.

Most people do not feel good until their Free T-3 is in the upper range with some needing to exceed it a little (like me). I am just over. But no signs of hyper at all. My doctor monitors me closely. She allows my TSH to be suppressed and my T-3 to be at the very top because it gets rid of my symptoms. Cutting back on my dose of Armour bring symptoms return with a vengence. I monitor my heartrate daily (it shouldnt go over 80 bpm at rest), my temperature weekly (should be around 98.6 and not over 99) and assess myself once a month (make sure I dont have anxiety, insomnia, heart palps, sweating, loose stools). I know hyper due to post-pardum thyroiditis. It wont sneak up on me or my doctor.

If your T-3 is at the very bottom, your thyroid is in the toilet.

I know thyroid. I have studied it for 12 years since the birth of my daughter when I had the thyroiditis. One doctor even said that I knew more than he did about thyroid......LOL At least he was being honest.

Hi Everyone,

2 months gluten-free under my belt. Improvement is very slow, but there is some. Looking for others who might want to socialize.

It takes time. And forget what the doctors say. I was told I was too thin to be hypothyroid. And I am and now properly medicated.

Yes yes yes!! And get an ANA too and have him test your thyroid antibodies. Look at your lab results and make sure your TSH is below 2. Most do best when it is below 1. I have to have mine suppressed to be symptom free from Thyroid issues. Be pro-active. ALWAYS get copies of your labs. It is your legal right.

Hey! Cut that out - I like those!!!

However, until I learned how to heat them properly, they were often gummy & quite unappealing.

They're just about the only thing I eat that I don't make myself.

(Just realized my sig doesn't at all reflect how many foods I can't have)

Tom I tried dry skillet, oiled skillet, broiled, baked and nothing made them taste good to me. I dunno. Mabye I shouldnt have said they were nasty., But since I really find them so, I didnt want her first experiences gluten-free to be awful and her want to give up. I told her her how to make yummy thin pancakes that would replace tortillas.

Dry skin is often a sign of fatty acid imbalance. Not enough Omega 3. Are you guys taking fish oil? Flax? Hemp? Chia seed? Walnuts? You need to include a lot of these in your diet to counteract all of the Omega-6s we get. Americans eat wayyyyyy too much Omega-6 which is found in high amounts in every other kind of oil except those above.

Other common cause is Hypothyroid. And yes, children can be hypothyroid too.

It is hard. I dont think it was as hard for me as some because I have been chipping away at my issues for over 12 years. I have tried various diets and have gotten used to "doing without" in many ways. So gluten free. No big deal. I love to cook and bake and I am not doing without at all.

But today I was at a local health food store and ran into a woman and I just saw the look of panic/fear in her eyes. She was shuffling through the tortillas and had some rice ones in her hands. I asked her if she was Celiac and she said yes. Just diagnosed last week with genetic testing and bloodwork. She is asymptomatic. She said her Mom is fighting for her life with Lymphoma and there she was with her little girl trying to figure out what to do to keep herself healthy.

I told her I was too and she looked relieved. I gave her some pointers and told her to put those rice tortillas back unless she liked the taste of glue. I told her about this discussion board, the name of a good and simple cookbook and wished her well.

But I know for the Average American a Dx like th is is a nightmare. But it does get easier.

I agree. Rather than complain or turn down a friends invitation. Just take your own food. There might be some awkwardness early on, but people get used to it.

You can even say. I dont want to focus on my disease, but I do want to focus on everything good in my life. Like my friendship with you. So I hope you will always include me in the fun, but understand that sometimes I will bring my own food.

Im thinking of good replies when a Doctor says "It's all in your head"....

1. Yeah, so is your co-pay. Because I am not paying for this kind of service.

2. Of course it's in my head. Last time I checked a medical book, it says the brain controls everything. Where did you go to medical school?

3. I wonder if you would say the same thing if I was your wife? Are you divorced doctor?

Please post your Thyroid labs. What many doctors call "normal" is not!!! I went through many doctors before I found my current one, who looked at my labs and then talked to me before she declared, "You are hypothyroid". All labs were "normal". How did she know? By listening to the patient. Imagine that!! She could also see that while my Free T-3 was "in range" it was at the very bottom and the same for my Free T-4. Armour has changed my life. It didnt cure everything. It couldnt take the gluten out of my diet, but it sure helped with my hairloss, kinky weirdo hair spots, dry skin, fatigue, extreme muscle twitching, freezing all of the time and few other things.

And I am underweight too. One doctor told me I could not possibly be hypothyroid cuz I was skinny and not constipated. See......it isnt so simple. You cannot take your doctors word for it that all is "normal" on your labs.

GET A COPY of all of your labs!!! It is your legal right. Then let us know. We can help.

Anything below 98.6 give or take a smidge is not normal during the day. It drops some at night, but should be 97.8 or higher when you wake up and IMO should never be below 97.8 at anytime of the day.

It indicates thyroid issues. The thyroid is your internal thermostat. TSH should be less than 2 with most people feeling good with it being 1 or less. Mine has to be completely suppressed for me to feel good.

Get your thyroid checked if your temp is low:

TSH

Free T-3

Free T-4

And all of the antibodies

"Patterning". I had physical therapy for a bit years ago to help with my disequilibrium. And one of the things the therapist told me to do was that whenever I made a movement that caused vertigo, to keep doing it until I no longer felt vertigous making that movement. It was so hard. But I did it. My first instinct used to be to panic if I felt vertigo, but now, I simply repeat whatever I was doing over and over and over again until it stops. It takes courage, but it has helped me a lot. So I may not be "cured" but I have rerouted things in my brain to help me function.

Im at about the same mark as you Nan. My neuro symptoms are up and down. Some progress and then I am thrown for a loop. Like you, I am pretty anal, so no CC. Although, I had some fruit from Whole Foods the other day that was "pre-sliced" and got bad neuropathy afterward. I concluded that it was sliced at the same time that they were mixing bread dough. It is a big open area and no walls between food prep areas. So I suspect CC. So no more sliced fruit. Only whole fruit that has been washed.

Also, gonna only shop in the later afternoon there. They bake early in the morning. Give it time for the gluten particles to settle. Or maybe pick a smaller local store that doesnt have a bakery. All grocery stores have bakeries here. So I have to get my produce somewhere. But thinking more and more how to avoid CC.

Most of the women in my family have endometriosis. I got lucky that way. But I wonder if gluten-free would have helped my Mom and my Sister. They have both had hysterecomies.

TSH of 2.4 is too high for most people. My MD would treat you with that TSH if you have symptoms. After treatment has started, she does not even look at the TSH. In my case, I get a thyroid panel done now and again and last time, my TSH was .08 Most doctors would freak at this and drastically reduce your meds. My doctor asked a bunch of questions and noted I was still hypo and "upped" my Rx. And I got better.

I am hoping over time that my thyroid will heal on gluten-free diet and that I can reduce the meds.....

Maybe your Candida overgrowth is all in your intestines and not systemic (in your blood). This is actually a good thing as it will be easier for you to rid yourself of them. A stool test can find this.

I am nightshade free and have been for about a month. Potatoes have definately had a neurological effect on me for years. 10 years ago, I would wake in the night feeling "weird". Disoriented for a few seconds. A strange taste in my mouth. It would pass and and then I would go back to sleep. This went on for months, before I figured out that it only happened when I ate potatoes. No potatoes....no "seizures". I realized that they were in fact "seizures" when I did some research. But as years went by, I slowly added some back into my diet and before I knew it, I would wake up with numb hands. Once again, it could be traced to the potatoes.

So no potatoes.

And I've cut ALL nightshades because they ALL contain neurotoxins. Google it. Since the majority of my symptoms are neuro, I am leaving no stone unturned. Just found a nightshade free pasta sauce. I am hopeful. I do miss tomatoes the most of all of them.

Three things can affect me that way. 1. Exercising too close to my Armour dose. Armour is a stimulant (T3) which speeds the heart rate a bit. So if I take one and then do some real exercise, I get that feeling afterwards. 2. Blood sugar drops. 3. The 3 or 4 days before my period (hormonal fluctuations)

Everyone's situation is different. But now if I get asked out for a meal, I take a protein and a carb in my bag. So, yes, I can always get a salad if there is nothing gluten-free for me. I dump my chicken/tuna/turkey on the salad, drizzle with olive oil, balsalmic, salt and pepper and enjoy. I treat myself to some pricy fizzy water. And afterwards eat my carb (usually a cookie or muffin). Went to a dinner party and brought my own dish. I explained to the host, that I had to dish mine first with a clean utensil. No problem. So far, no one has said a thing about it to me. They all hope I get well!! I dont have a wide circle of friends, but I have enough. But I will do these things with people that are new or not friends as well. I simply dont care what anyone thinks. That is not my problem.

I have the same frustrations, anger, depression about my body. The food is the least of my worries.

I get nervous when I book a play date with a friend (shopping or eating doesnt matter). Will I be able to walk right. Will my ataxia be obvious. Will I have a migraine and have to cancel....AGAIN!!

When my family wants to do something fun on the weekend. Will I be too sick to go? What must my daughter think of her Mom? How I have I failed everyone? Why cant I be normal physically? Mentally? Why why why?

I have never said, "Why do I have to eat gluten free?" I just want it to work, so I can carry my damn food with me everywhere I go and be frickin normal on the inside and outside. Think like a normal person. Walk like a normal person. Feel my skin like a normal person. Have a clear head and carry on a conversation without having to brace myself against something.

I'll cook. I'll bake. I'll buy gluten free. And I will carry it in my purse on every outing. Eating out with friends, a day at the park, a trip to the mall. These are what I CRAVE!!! It is so not about the food with me.