New Nd Undiagnosed

[TygerCubs]

Hi!

I have been reading for several weeks but haven't been posting yet. It's amazing how much I see myself and my family in the problems people describe in this forum. My attention was captured when my mom saw a mystery diagnosis that showed a child with celiac disease who had seizures, neurological symptom. I've been searching for years for something that explained my problems with anxiety and the general sick feeling I have all the time and its association with food. And then my daughter with her unexplained stomach aches and diarrhea all the time. Then upon reading I find that it can cause lesions on the brain - my mom was diagnosed with MS based on the lesions, but the treatments they have tried only made her sicker but she has all the ataxia, numbness in hands and feet, brain fog, vertigo, really a long list of what I am seeing described here.

I don't have insurance right now so I decided to try a gluten free diet to see if it helped and it is a lot! The difference in my daughter in only a few weeks is miraculous, her joints aren't aching, she says she isn't tired all the time anymore ( I didn't know she was before) and she hasn't had a single bout of diarrhea or a stomach ache!!! She is also no longer ravenously hungry all the time and her cheeks are pink!

My mom is still eating gluten but is seeking diagnosis. Her family doctor tested her and said she was negative. She said 'oh well' but I convinced her to not give up because something struck me as odd. The nurses said they couldn't read the results and the doctor avoided her calls before he finally gave her the dismissive 'it was negative'. She went and picked up the results today and of the 4 tests she asked him to take he took 2, one said IgA 133 but didn't say if that was neg. or pos. or give a normal range and the other said it was still pending! So I talked her into calling the Chicago Celiac Center since they aren't that far from her. I hate to see her waste away when there is even a small chance of some relief!

Almost everyone in my family has some sort of autoimmune disease, diabetes, MS, Rheumatoid Arthritis etc. My brother was just diagnosed with bipolar disorder. Everyone has major food issues!

Well, that's the quick summary, I wanted to get that out so I wouldn't feel guilty posting:)

One question, does anyone know if the symptoms caused by the brain lesions are possibly reversible?

I am hoping that in the near future some of us will have a diagnosis or at least have Celiac eliminated, but this s the very first thing I have ever found or heard of that finally explains everything!

Marie

[Viola 1]

Hello and welcome to the forum.

I don't know for sure if the leasions disappear with a gluten free diet, however, I know that MS patients are told to switch to a gluten free diet in this area, because it certainly helps them. So, even if an MS patient tests negative for Celiac, it helps to stay gluten free. It made a big difference in my step sister who has MS but not Celiac.

Hope this helps a bit.

[GFBetsy]

Don't know about those lesions, but I seriously doubt that that IGA number is negative. Of course, all labs have different reference ranges but the reference range for my daughter's IGA said that over 20 was positive. Your mom should keep pushing until she gets a more complete answer (test results as well as reference ranges for the lab). And if her doctor won't help her on this, she should fire him and hire someone who will.

good luck!

[Rachel--24]

Then upon reading I find that it can cause lesions on the brain - my mom was diagnosed with MS based on the lesions, but the treatments they have tried only made her sicker but she has all the ataxia, numbness in hands and feet, brain fog, vertigo, really a long list of what I am seeing described here.

This stands out to me because I have Lyme Disease and have been doing quite a bit of research on the subject. Many many people with Lyme are misdiagnosed with MS because of the lesions on the brain. Lyme causes these lesions too. Also steroids are used in treatment of MS which can be disastrous for a person who actually has Lyme. The steroids will WORSEN the situation by driving the Lyme deeper into the tissues. Steroids are the worst thing a person who has Lyme should ever take and it will contribute greatly to progression of disease and symptoms.

Studies have been done and turns out that Lyme and MS *may* be the same thing.

Some of those who worked with Steiner in the United States as well as other researchers hypothesize that MS and Lyme might be either: 1) the same disease; or 2) different diseases caused by two different spirochetes carried by the same arthropod vector

This site shows two US maps...one with cases of MS and the other with cases of Lyme (deaths only)....they are nearly identical. Geographically speaking....these 2 diseases have everything in common.

Open Original Shared Link

Many people with Lyme have Celiac Disease or gluten intolerance as well. All autoimmune diseases accross the board are seen in Lyme patients. I myself had Graves Disease....I dont carry Celiac genes but do have non-celiac gluten intolerance.

Congenital Lyme is also not uncommon.....the bacteria can be passed from mother to child and in some cases entire families are infected with the disease.

I have read that people who were incorrectly diagnosed with MS and then correctly diagnosed with Lyme had their brain lesions disappear following effective treatment of the Lyme bacteria.

All of those symptoms that you listed are symptoms of Lyme but can also be symptoms of Celiac. Many people have both.

[TygerCubs]

That's pretty interesting with the Lyme disease. I just went and read about it and how it is suspected to have an autoimmune component. Maybe it is one of several things that can trigger Celiac symtoms in someone who is genetically predisposed?

I'll ask my mom if she has been tested for it already. I know she is concerned now that her test for Lupus might not have really been negative, she gets the buterfly rash on her face but her dr. assured her she didn't have Lupus either.

Her MS dignoses was hinged on the brain lesions on the MRI and she was under the impression that MS was the only thing that did that. Her doctors weren't very well informed about MS either. Yes she took steroids and was on interferon for a year and not only did it not help but she got a lot worse while taking it. Now she is pretty much refusing to take anything or try anything and even has to be prodded to go to the doctor at all. She is a retired RN even!

It is sounding to me like they might have been barking up the wrong tree all along. Yeah, I am realy going to encourage her to see the people in Chicago.

Thanks for that article Rachel! I have never heard of any of this before. I was surprised to see the area of CA we used to live in shaded on that map and also the place my mom grew up heavily shaded. Very, very interesting.

I have also never heard of a gluten free diet for people with MS. I hope doctors start catching up on all of this, geez.

Thanks!!!!

Marie

[TygerCubs]

Don't know about those lesions, but I seriously doubt that that IGA number is negative.

I thought that was weird too.