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I had tingling and numbness that actually got worse after I went gluten free and scared me for over a year. However at the 2 year mark it's a very mild symptom. I took sublingual b-12 which helped a lot in the beginning but after that I focused on diet and supplements. I have found the healing process to be very slow but steady. One thought is to take a look at your sugar and caffeine intake, both what you are consuming and when. I have found that I am much more sensitive after going gluten free. It was actually causing major mood swings until I changed how I eat sweet food. This might not be relevant at all but I found that I needed to add strength training to my exercise regimen to help with some of the physical symptoms like jumpiness and anxiety. In hindsight I think my muscle strength was coming back (I didn't know it had gone actually) but doing a weight class and yoga has calmed my body down a bit.

Neuro symptoms are tough!Good luck.

Hi, I'm just seeing your post so maybe you've gotten answers already? But I really wanted to reply because the constant hunger has eased up! And I really think, like so many others on this forum have reminded me, that it was just a matter of time. Finally I'm really seeing my body shift to having a  healthy appetite. I had the constant hunger thing before I got diagnosed with celiac so it makes sense for me that I'd need my gut to heal in order for that to settle down.

Aside from that I've found 2 things have helped a lot.
- giant veggie/spinach, greens filled smoothies within 30 - 40 min after exercising, from fresh veggies not a mix.  

or

- eat a real meal after exercising within an hour.

I got this info from other exercise websites, but I really think its my gut healing that has made them work.

good luck!

oops there's no way to delete a post -- i started to write but now need to run -- sorry!

yes, and I'm still dealing with the itchiness 10 months later. Hopefully that won't be your story.
I did find that eliminating some irritants besides gluten (soy, dairy, nuts, chocolate) and reducing salt and sugar has helped.
I have also found that if I take a quick hot shower at night and put apple cider vinegar on my skin, I can almost sleep thru the night.
I also have desonate ointment and that seems to help although I rarely use it because I don't want side effects.

If you search the forum you'll find alot of other information. The dermatologist I saw said I didn't have DH. My skin is itchy and burns but there are no itchy.

  I saw Dr. Fassano and he said until the gut is healed there isn't really anything to do for the itchiness except wait.

It's discouraging though.I hope you feel better soon.

I had a similar symptom except that I also had a strong tingling sensation in my body also. I cut my sugar intake way back and it has helped tremendously. I removed fruit, sweet potatoes, cut back on carrots, and of course all sugared foods including chocolate. It was complicated to figure out how to remove sugar but worth the effort. I don't get the racing feeling hardly at all anymore.

(Before going gluten free I have always gotten the racy feeling from fried foods and salty foods like french fries. So I don't eat them. Not sure if that's the case for you -- also not sure why that happens.)

I can relate! In my case, I've been on the diet for 6 months, but I've been about 113 for 15+ years and am now stuck at 118. And what bugs me is that rather than feeling like I've reached an ideal weight I feel heavy.  In my case my appetite is changing so I'm still eating when I'm not hungry. But I'm not used to how little I need to eat now that food is being absorbed! Plus I'm just over 40... I don't care what they say, the metabolism dive is a big deal (at least for me). I'll second the comment on gluten free carbs - I don't touch them. But going into the gluten free diet I was in a good place to control carbs.



It stuck out that you said you gained all the weight in the last 5 months. Did something change? Or did I misunderstand?

I've found throughout this process that I cannot "trust my gut." I have felt despair over this.

I am a huge advocate of eating unprocessed, nutrient-rich foods as a lifestyle choice that is both healthy and delicious. I went through a remarkable process of healing from fibromyalgia through diet and exercise when I was in my mid/late 20s. I adopted a severely restrictive diet that excluded meat other than fish, diary except for yogurt, all sugar, all wheat flour (but not rye), coffee, and alcohol. I fueled up on fish, nuts & seeds, whole grains, fresh fruits and veggies.

At the time, it was agony to give up so many foods (I love to eat!), but I discovered that I came to prefer my new diet. Nowadays, I have no desire for hamburgers or french fries or anything with high fructose corn syrup. It just tastes bad to me. Fresh strawberries, garlic-sauteed bok choy, toasted pine nuts - yeah, that's good stuff!

I felt like I was in touch with what my body needed. YET, I still was unable to identify that gluten was making me sick. It took becoming aware of Western medical research on the subject of celiac/gluten intolerance for me to know I needed to dump gluten. Then, when I stopped putting gluten into it, my body had a severe withdrawal reaction. Even though eating gluten has very bad consequences for me, my body got really sick when I stopped eating it.

It feels like a learning process to go through this. I'd rather believe that I can listen to my body and it will tell me what I need, that I am in control of my health. What I think is actually true is that this illness that I have is random. It was encoded into my genes before I was born. I'm grateful that I stumbled into the medical knowledge that can make me well.

Good topic. Important. To reference Maslow's hierarchy, our psychological needs around this come after our physical needs, but they're still a huge part of this process. Thanks for your post.

Lucia, Thanks for your post. Your story sounds very similar to mine. I share your sentiment - I cannot only trust my gut and that this illness is part of my genetic code. I do think there is a higher wisdom in living out this process and doing it as well as I can, then facing the next development, though I also find that disappointing. I'd rather believe that linear success existed somewhere.

I was diagnosed with celiac about 2 months ago. Overall, it's been a great relief. The head fog is clearing, my sense of balance is improving, and that tiring sense of malaise and deep exhaustion is going away a bit more each day. I have also had almost no spring allergies.

So onto my story --  
because of an accident,  job change, and a move, I spent much of the last 6 months feeling quite sick. In that process I gained about 8 pounds.  I only worried about it because my weight is very stable (the same weight for about 20 years) so a weight gain is typically a symptom of something else. I hoped when I went on the wheat free diet that my weight and the feeling of heaviness in my stomach would go away or the symptom would lessen.  However nothing has changed at all. In fact my belly continues to feel heavier.  

Before my "normal" weight was slim, but I always felt bloated. I was always hungry, always munching, etc. I believe that I have a sensitivity to soy, dairy, corn, oats, and all nuts except peanuts, but I can eat them in limited amounts.

I'm completely baffled about what to do next. My other symptom (for the last 4 years) is shortness of breath in my lower lungs. The allergist said its scar tissue from childhood asthma - I suspect an allergy.  I'm also in the process of sorting out dermatitis issues. So far a resin used in handbags is a culprit, certain sunscreens and sun exposure. And lastly I have some injury from the accident that has weakened muscles my core muscles. I hope to start working with a physical therapist next week.

I'm missing something though. This heaviness really 'worries' me.  
Should I see an allergist and get blood work for more food sensitivities? Is there another type of doctor I should see? Is this just the process? Since so many seem to have soy/dairy/nut allergies is that what is the most likely cause? If so, why did it start before I got diagnosed with celiac?

My body is confusing me!



Thanks all.