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sandpiper

Need Help From Ravenwoodglass

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Hi ravenwoodglass,

I did just join the forum on the 15th, and have posted a couple of message/questions, with no returns. I might not be doing something right, but I would love to hear back with some help and input for our son.

Reading your post and your past experiences it sounds as if you might be someone to ask about the neuological aspects of the disease and it's effects. My thought are to be able to get some printed documentation on the ongoing pain from the nerve damage that is done from being gluten, and it does sound like you have had to live through this terrible pain (I am very sorry to hear that you had years of this) reading one of your post in particular about your leg pains and the suffering you endured.

I did call the university of Maryland and spoke to the nurse in the research department, and said the connection with the neuopathy was common and I am waiting to hear back and see about them sending some information that I can sink my teeth into and physically hand it to our son who is in constant foot pain after four attempts with surgery and is on heavy duty pain medicine that still does not seem to "take care" of it.

To mention some behavioral mood swings alone would be enough to say that he is not willing to do some of the investigation on his part with the possible connection to having celiac and wanting this to be his of his life and life syle change. After being gluten free for four years myself I know just how bad I can feel if getting a hold of anything close to gluten. So if I could get some more information to give to him and to try and see if this approach would leave an impression on him to atleast check it out it would be wonderful, because as a mom it is too painful to keep watching him go through all this pain and not getting any relief.

Thanks for listening and I do hope to hear back from you and for your help,

Sandpiper

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Celiac.com Sponsor (A8):

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Hi Sandpiper, Don't be afraid to PM me if you want or need to. You do that by clicking on my name near my avatar and a pull down tab will appear.

There are a couple ways to get some good stuff to show him. Do a search here with the word neurological, there is a lot that will come up. You can also do a google search with the word neurological and celiac, again you will be overwhelmed with info. You can do the same with depression, anxiety etc.

One thing that may be going on with your son's foot is RSD reflex sympathetic dystrophy. This often occurs after an injury or surgery and can be much more painful that the original problem. Have they referred him to a PT? Sometimes they can do electrical stimulation and hot and cold treatments can help.

If his nerves are being impacted and contributing to this he may get some relief by taking a sublingual B12, do make sure it is gluten free and sublingual. If he is celiac his body is not going to be able to utilize this vitamin and it is vital to nerve function and conduction. It is not an instant fix but could help in as little as a week.

As to the other issues he has going on the nurse was absolutely correct, problems with mood and gait, speech and memory are often seen with celiac. These problems can be severe before we realize that what we thought were normal GI stuff escalates into a problem. Some can have severe neuro impact with only really loud and rumbling stomachs and an occasional upset tummy or C (IBS) to give us an idea of the GI stuff that was going on.

If you can get him to sit down here for a while as well as showing him the stuff you can download it may help him to understand.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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sandpiper, I have a son who should be gluten-free but is not, he has 3 kids that should be gluten-free but they are not. My son already has liver damage, but still he is not gluten-free, his only daughter 9 years old, has lost all the enamel on her teeth... I am only the lowly mother, & all kids know that their mothers know nothing :rolleyes::rolleyes:

If the above suggestions do not work for you, my suggestion is to find a total stranger somewhat close to his age that is gluten-free & introduce them. either on line or in person...

I recently met a young man whose mom has celiac & he was not even sure what it was exactly!!!!!! Yes, can you believe it. I captured him for an hour or so & filled him in & sent him a couple of long emails. Whether it sinks in, who knows, but at least he listened to me - the complete stranger.

also remember that we each make our own choices, hard to accept when it is your baby, but I say this after 4 years of beating my head against a brick wall...

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