Nuerological Problems Possible Celiac?

[JOA Artist]

Hello, My daughter is 29. She has been diagnosed, with most probably having ALS. Her problems started late in 2005, when over a course of a few weeks after a honeymoon in G. Caymans with a stomach flutter, intense back pain that went away quickly, then hip pain that stayed, and FOOT DROP.

She sometimes had to beg for tests, scans, EMGs, spinal tap, and was told she had nerve damage in her leg, and until she got pregnant and had already seen 4 Neurologists, none of which could tell her a thing, and didn't offer much help. When she was first pregnant, the 4th doctor told her it was a virus and would probably go away after it had run a course of 286 (<>) days. Said come back in a couple of months.

In one month, she was loosing all use of the Drop Foot (right) leg and rapidly loosing strength in her left leg. By 6 months pregnant (Dec. 06) she was starting to use a wheelchair more and more, and was INCOURAGED to leave her job early in January, when she was totally wheelchair.

Since then the baby has been born. She did not get better. She has gotten worse, and we lose her a little more every day. Both arms and hands are less active by the day. She barely can feed herself. She started IVIG (immunoglobulin), and they have stopped that to do Plasma Transfer.

A friend has called to tell me of a friend's husband who had lost the use of all his limbs, before they discovered he had Celiacs.

MY QUESTION: Does anyone medical or other, know of other cases anywhere close to this? Last seek she also saw an infectious Disease specialist who said he could run Lyme desease again, and allergy testing, and probably Celiacs but that it was not his field.

WHAT DOCTOR would know how to test for this accurately!! I welcome all comments.

thanks

[Karen B.]

MY QUESTION: Does anyone medical or other, know of other cases anywhere close to this? Last seek she also saw an infectious Disease specialist who said he could run Lyme desease again, and allergy testing, and probably Celiacs but that it was not his field.

WHAT DOCTOR would know how to test for this accurately!! I welcome all comments.

thanks

She needs for her primary care doc to do the Celiac blood test and probably should go to a gastroenterologist for an endoscopy and biopsy.

You may find some of these articles helpful:

Ataxia, Nerve Disease, Neuropathy, Brain Damage and Celiac Disease

https://www.celiac.com/st_main.html?p_catid...-21107209735.70

[JOA Artist]

Karen, thanks.

I did go to the links.

I am also going to ask my internal medicine doctor to test me and my daughter, as I am going thru chemo, and don't know if they can even test me. FOR her we don't konw the wait.

DOes anyone else in your family have this, or have they been tested? As I understand, most people never know they have it, due to the small attention it has gotten for decades.

thanks again for your time.

[NY547]

As I read your post, Lyme disease definately came to mind. With the severity and rapid progression of symptoms though, it sounds like there is definately something else going on. I am assuming they ruled out MS? There are many forms of the disease, some with very rapid onset. Research has linked MS to celiac and I have a friend whose husband was stricken with MS, and afew years later, their son was diagnosed with celiac. It is possible to have both, there is a close genetic association from what I understand.

I will keep you and your daughter in prayer as you seek for answers. Wish I could offer something more....

[Karen B.]

Karen, thanks.

I did go to the links.

I am also going to ask my internal medicine doctor to test me and my daughter, as I am going thru chemo, and don't know if they can even test me. FOR her we don't konw the wait.

DOes anyone else in your family have this, or have they been tested? As I understand, most people never know they have it, due to the small attention it has gotten for decades.

thanks again for your time.

My Mom has it and my sis has such a severe wheat allergy that she can't eat enough to test positive. When I was diagnosed, the health crisis was brought about by severe sciatica and anemia. The doc originally thought I had colon cancer because I was so anemic, Celiac was the good news. I was so deficient in folic acid and B vitamins that my body's nerves couldn't repair themselves. Once I healed up and started absorbing sufficient nutrients, I stopped having problems with sciatica. Sublingual B-12 and folic acid drops helped speed the healing since they didn't rely on my gut to absorb the nutrients.

Celiac doesn't rule out other problems like Lyme Disease but nothing works right when you don't absorb nutrition from your food.

[CarlaB]

infectious Disease specialist who said he could run Lyme desease again, and allergy testing, and probably Celiacs but that it was not his field.

I hate to say this because it's reprehensible on the part of ID docs, they WILL NOT diagnose your daughter with Lyme Disease. Period.

She MUST be tested with IGeneX, which they will not use (Open Original Shared Link). You MUST take her to an LLMD (Lyme Literate MD) for diagnosis and treatment.

Check out this movie trailer ... it will show you just how sick those of us with Lyme are. Open Original Shared Link

Just like cancer, childbirth, orthodontistry, etc. need a specialist, so does Lyme. Unfortunately, there is a debate over Lyme as seen on the video. You can read more about it here www.ilads.org.

You can get more information on Lyme at Open Original Shared Link.

BTW, my doctor is the one with the crazy tie who says, while we're all fighting over this, it's the patients who suffer. He's the best ... the president elect of ILADS ... I FLY all the way to NY to ssee him, and I'm getting better.

If a person gets diagnosed with ALS or MS without PROPERLY ruling out Lyme Disease, that doctor is irresponsible.

BTW, ask for the celiac panel from your PCP (be sure he does the whole panel and not ONLY the IgA as many of them do) .... actually, my LLMD runs the celiac panel on EVERYONE. It's important, too. I eat gluten-free, but do not have celiac. gluten-free helps me tremendously.

[Guest micah]

Carla,

Can I use Igenex without a doctor? or do I have to have a doctor involved?

Micah

[gfpaperdoll]

I am not a lyme expert so will not address that except to say that I have read enough over the last few years to know that you should get tested for it - by a specialist.

for the gluten side - I would just test thru Enterolab.com & be done with that part. Stop feeding her any grains - except maybe some rice & no dairy, immediately & then see what your enterolab results are. But I would not wait for the tests to change her diet immediately. The real truth is that no one should be eating gluten (wheat, rye, oats, barley, spelt etc) or dairy. Just change her diet it will certainly not hurt her.

At one of the support groups in Houston, there was a lady there - looked very healthy & she had been completely bed ridden & dying - when guess what, Her Daughter was diagnosed with celiac. yep, you can imagine that they put two & two together & she also went DF/gluten-free - saved her life & she was not the only one there that was livid about the fact that no doctors are diagnosing people & just letting them die...

[JOA Artist]

THANKS. I appreciate the info. Do you have a connection to Enterolab?

ITs $369 for the kit, and I have no idea how to see if insurance would cover it, before ordered.

[CarlaB]

Carla,

Can I use Igenex without a doctor? or do I have to have a doctor involved?

Micah

A doctor has to order the lab test.

I am not a lyme expert so will not address that except to say that I have read enough over the last few years to know that you should get tested for it - by a specialist.

True, I did have to go to a Lyme doc to be diagnosed because even with a positive test my doctor would not diagnose me. Plus, there's some interpretation to the tests ... they are not cut and dry at all. You need a specialist to analyze it, for sure.

The CDC has set criteria for a positive test that they use for tracking purposes and is NOT meant to be for diagnostic purposes, but virtually ALL doctors but a Lyme specialist will use the CDC standards. Even with a CDC positive my doctor said it was negative.

Honestly, I'd test her properly for Lyme before I got the Enterolab test. Enterolab can tell you that you're sensitive to gluten, but cannot tell you whether you have celiac. I would get the celiac tests. I'd also get the Lyme tests.

A Lyme doc is very comprehensive in his diagnosis. Many people as sick as your daughter also have things like heavy metal toxicity. Lyme docs will test for this.