What A Setback, Disappointing!

[adab8ca]

Well crap. I have been gluten free for a month. MAin symptoms at diagnosis are painful neuropathy and big weight loss, anxiety, depression and crippling insomnia also maladsorption of Vitamin D and possibly others to be retested in a month.

I was doing OK, sleepng OK, trying to wean myself off of the sleeping pills. Nerve pain was tolerable. I did a LOT this weekend and today, I feel like crap. Everyhing hurts. Ankles, shin bones, arms, legs...Like the worst flu ever, although I felt like this routinely on gluten, but today is awful. I am due to biopsy results on Thursday (which is freaking me out, I hope all they found was celiac)and I know the Dr. will stare at me blankly when I tell hom my symptoms since i KNOW he thinks that I should be better by now.

I don't think I was glutened but who knows.

I learned HERE that if there is nerve damage to not limit fat intake. No Dr. of the 4 specialists that I saw in this drama ever suggested that but I had it corroboratedby stuff I had read and by a friend of mine who studied biochem and agreed it made sense. So onobody knows anything and I am frustrated.

I am just venting, I am So disappointed to feel so horrible when I thought i was dooing everything right.

grumble grumble

ada

[Emilushka]

Good luck! I'll send you good thoughts for only the expected biopsy results.

[justChris]

i'm sorry you feel like such crap, but maybe it's comforting to know I'm feeling just as crappy. All my symptoms are neuro and no stomach problems. My gastro wants me to have a biopsy done (scheduled for 10/11) and has put me back on gluten since last weekend (9/25). I notice a huge change in how i feel. Muscle spasms all over body, pain in joints and muscles, muscles are tight, etc, etc, etc. I was gluten free for almost 2 months when they wanted to me to go back on and I want to say that the spams for the most part went away. Some of the other symptoms remained - I try to believe they were going away as well but who knows. I'll be back gluten free 10/12 and will start all over.

I am nervous about the biopsy results - i can't imagine how i'll feel if they don't find celiac.

Stay strong - much easier said than done. I find solice in the fact ohers are feeling the same and I'm not crazy.

[lucia]

I know the Dr. will stare at me blankly when I tell hom my symptoms since i KNOW he thinks that I should be better by now.

I don't think I was glutened but who knows.

Hi Ada,

A few things:

Firstly, my impression from reading this board is that people who are struggling with neurological symptoms tend to take longer to recover. That's just anecdotal, but several people voiced their agreement when I submitted this on another thread.

Secondly, it takes a long time to heal! At one month, I could still barely get off of the couch. When I think back to that time, I can barely believe how sick I was. I was exhausted, and also in a lot of pain from neuropathy. Now that I'm feeling better, I'm happy with my progress even though it's been six months since I stopped eating gluten. I attribute a lot of my recovery to acupuncture, so I'm happy to have found something that has worked for me.

Thirdly, when I was really weak, my acupuncturist told me not to push myself. My body needed to rest. Now, she suggests that I take on more. She says that I'm out of "danger". But, in her eyes, doing too much when so weak could have set my recovery back. I'd suggest being careful too not to push yourself too hard. Your body has been struggling a long time with gluten, and it's uniquely vulnerable right now. Take time for yourself to rest.

Finally, you could be experiencing cross contamination or even developing an intolerance to another food. Most of us on the board have been through these experiences. It takes awhile to figure out how to avoid gluten. It also often happens that during the healing stages, people develop secondary intolerances. In my own case, I developed intolerances to dairy, soy, and corn. Just a note that it wasn't until I gave up corn that my neuropathy went away.

Best to you,

Lucia

[adab8ca]

Hi Ada,

A few things:

Firstly, my impression from reading this board is that people who are struggling with neurological symptoms tend to take longer to recover. That's just anecdotal, but several people voiced their agreement when I submitted this on another thread.

Secondly, it takes a long time to heal! At one month, I could still barely get off of the couch. When I think back to that time, I can barely believe how sick I was. I was exhausted, and also in a lot of pain from neuropathy. Now that I'm feeling better, I'm happy with my progress even though it's been six months since I stopped eating gluten. I attribute a lot of my recovery to acupuncture, so I'm happy to have found something that has worked for me.

Thirdly, when I was really weak, my acupuncturist told me not to push myself. My body needed to rest. Now, she suggests that I take on more. She says that I'm out of "danger". But, in her eyes, doing too much when so weak could have set my recovery back. I'd suggest being careful too not to push yourself too hard. Your body has been struggling a long time with gluten, and it's uniquely vulnerable right now. Take time for yourself to rest.

Finally, you could be experiencing cross contamination or even developing an intolerance to another food. Most of us on the board have been through these experiences. It takes awhile to figure out how to avoid gluten. It also often happens that during the healing stages, people develop secondary intolerances. In my own case, I developed intolerances to dairy, soy, and corn. Just a note that it wasn't until I gave up corn that my neuropathy went away.

Best to you,

Lucia

Thanks so much!

I am definitely looking into acupuncture, need to get a script from GP and insurance will pay for it...

How did you know that corn was a problem? I don't get GI issues (well, they are so far the same no matter what I do) but I am wondering if I ate something i shouldn't have...sigh...

thanks

ada

[lucia]

Ada,

I stopped eating corn because I thought maybe I was reacting to it with GI symptoms. Instead, what happened is that within 3 days almost all of my neuropathy disappeared. I've eaten corn twice since then, and both times the neuropathy has come back full force. It's scary! I don't know if this will be forever (it's quite possible), but I'm just taking it one day at a time for now.

It felt like a miracle at the time. Not sure if it will be your miracle too, but I want everyone to know my story.

Lucia

[chasbari]

Couple of things. I agree about not overdoing it... hard to do when you start healing and feeling so much better. It's easy to forget just how bad things were and be tempted to overdo it. Some of your pain sounds a lot like my RA flares which were easily triggered when I overdid it. I can't tolerate corn and have also noted that fat and protein intake has to be high for me to not lose weight. In the early stages of my healing this was a problem because I had fat malabsorption issues. It's gotten better over time... that patience thing is so difficult though. Good luck.