14 replies to this topic

[adab8ca]

I am scheduled for biopsy Aug 31. My symptoms have been bad neuropathy,anxiety, depression, weight loss (25 pounds since Feb) no appetite, some nausea,but no real GI symptoms like D though...My B12 and Iron were marginal and vit D was a little low. This all started in Feb of this year.
Went to neurologist for the neuropathy and he scheduled the celiac tests (along with a bunch of others), where I had a ttg>200 (normal <10) IgA gliagin 24 (normal <11) and IgG Gliadin 38 (normal <11).
Neurologist thinks something else is going on, said it definitely wasn't celiac (and is sending me to a rheumatologist because of an ENA result ) and says "well, even if it is celiac, going gluten-free won't help your neuropathy because you have no GI problems". I literally sat in my car and cried for 1/2 hour after that appointment.

Then at work on Thursday, my boss says to me after commenting on my huge weight loss "well, hopefully they have ruled out cancer, there are lots of markers for that these days". So when I said we were focusing on the Celiac right now, she said "well, I don't know....".

I went gluten-free for a month and felt like crap, anxiety, joint pain, awful (from late June to late July and I was MILITANT) but am back on gluten for the biopsy (it will be 5 weeks) and feel no worse. I am scared that I will never feel better. I wish that people, if they have nothing supportive to say just keep quiet.

[kareng]

What the French toast? Why take a celiac panel if the results are really positive but don't mean you have celiac? That doc may be right that there is something else but unless I'm confused, Celiac is one issue. Some doctors don't realize there can be things other symptoms than GI issues. Hopefully, your GI doc is a bit more up on things. Make sure your are getting an endoscopy. It's Ok to get a colonoscopy, too. The endoscopy is the only way to biopsy for Celiac. Good luck! I know it's frustrating dealing with doctors. I took a specific list of what celiac tests my kids should have from the U of Chicago and they both got different things and are each missing different ones of the listed tests. Insurance will probably have a fit about getting them more tests. Agghhh!

[mushroom]

This is totally insane, that a neurologist would not know that neuropathy can be caused by gluten . In fact, for some it is the only symptom. You have the weight loss as well, which is another classic celiac symptom. My sister went from normal to "a bag of bones" in a very short time. Nausea, low B12, iron and D - well, this guy knows nothing about celiac And sorry about your non-supportive boss.

Here are some {{{{hugs}}}} for you and I hope your biopsy results can confirm your diagnosis. Make sure they take at least five or six samples because there is a lot of small intestine and the damage can be patchy and is really only visible under the microscope unless it is really bad, when it can be seen with the naked eye.

[T.H.]

So, so sorry to hear that things are not resolving easily for you, hon!

It sounds like your issues are very complicated, and obviously I'm not a doctor, but in the spirit of offering up anything at all that might offer possible help, I'll say a couple things.

1. First, your neurologist is incorrect in his statement that going gluten free won't help if there is no GI problem. In March 2010, I've seen an article/study on just that issue: neuropathy that is affected by gluten in people who have no gut issues whatsoever.
(There is an abstract of this in this journal: http://www.thelancet...0290-X/abstract You would have to pay to see the full journal article, or find this in a college library, but might be worth showing to the doctor, yes?)

2. This...well, I'm not sure if it will be of help, but just perhaps it will. You were saying that when you went gluten free, you felt worse, yes? Your description didn't sound like the gluten withdrawal I've heard of (wouldn't swear to that), but it actually reminded me a bit of one issue that has affected me. Since going gluten free, we have discovered that I have issues with other foods. They do not test positive as allergies, not by prick test or blood test. I don't get hives or anything. But if I eat them, my list of symptoms can involve the following, among others: depression, joint pain, extreme anger and emotional issues, and neurological issues. I have two partially herniated discs and carpal tunnel. When I am off of these foods, they get better. Don't hardly bother me. When I take these foods now? I have pain and problems so bad I can hardly move - ended up in the ER, unable to move my head and neck, with pain radiating from my spine, and no one having a clue until my doc speculated that maybe I was reacting to a food (I did have a FEW food allergies diagnosed), and we approached it that way and the pain went away.

I always end up talking about this, since it's my own experience, and I know it's not what everyone else's is. I know there's lots of issues that can be involved in our bodies, since we're such complicated machines, but since it was REALLY hard to figure out what my issue was, and no tests can figure out WHY it happens, well...I feel that sharing it with others who are also having trouble finding a diagnosis might be helpful. Might not, but more options is not a bad thing, yes?

The way we figured out what was the issue for me was a simple food journal. I cut all foods down to single, unprocessed ingredients - even oils and flours were out for a while, since they had processing and potential contamination of some kind. I ate organic foods. And I kept track of my foods and my reactions. I wish I had eaten the same food for a couple days in a row and switched off: it would have made it easier to track the symptoms down. Some took 24 hours or more to show up.

If you cared to try this out, I'd possibly look at what you were getting more of in your gluten-free food, if you were eating gluten-free processed foods? Since you felt worse on that diet, it might be a clue for you. I felt much worse on the gluten-free diet at first, and it turns out I'm allergic to sugarcane (which is in higher levels in gluten-free food), and I have issues with eggs, dairy, and especially corn (also very prevalent in gluten-free foods. As starch, cornmeal, or things like xanthan gum, which is derived from corn).

The corn is a challenge to avoid, as it is in everything from iodized salt to citric acid. If you wish to avoid that, I would check a corn allergy site for ingredient help. And the reason I mention it especially is that in talking to others, dairy and corn are two common foods that I hear people say make them feel very, very angry - militant, as you say - after eating. Corn on one day makes me honestly wake up the next day on edge and angry, and I feel frustrated and waiting to snap all day, no matter how good the day is. Less corn, less anger. No corn, and it's like the world is a happier place. I've come across more than one person who has had mood and emotional responses to foods, whether allergies or not.

I've also heard more than one doctor say that it's all in our heads because there's no possible way food could affect our mood, so it may be difficult to talk about this with your doctor. Not impossible, but you might not get any support at looking at foods, if you choose to try that.

Oh, and I had no gut issues in the beginning, either. Not even a clue that I might have food issues of any kind.

I don't know if this helps, but here is wishing you the best of luck, and the courage to keep fighting to figure this out. You can do this!

[Kay DH]

I went gluten-free for a month and felt like crap, anxiety, joint pain, awful (from late June to late July and I was MILITANT) but am back on gluten for the biopsy (it will be 5 weeks) and feel no worse. I am scared that I will never feel better. I wish that people, if they have nothing supportive to say just keep quiet.

It amazes me what doctors don't know. I had one tell me "Celiac seems to run in families." She said they really didn't study it in med school. I went gluten-free last October after GI symptoms kicked in following the flu. I had probable DH for decades, but never diagnosed because it wasn't bad enough, or the doctors weren't good enough. One think that I didn't realize was that once I went gluten-free my tolerance for gluten just dropped. Before I could eat a slice of bread without D, but with other symptoms. Now I can't eat a crumb. To make a long story short, unless you are militant at the modified food starch, processed in a plant that also processes wheat... level, then you can also have cc symptoms. As a previous poster indicated, you can have multiple sensitivities. It takes time for all the causes and effects to be determined, but once you do then life is so much better.

[Ginsou]

I also had joint pain constantly, among other symptoms before I was able to have more tests done...on my own without insurance. I've been lactose intolerant for 30 years, and the past few years have also found out I also am milk intolerant, soy intolerant, gluten intolerant, and am allergic to chicken,nuts and sesame! I still eat chicken, tho, because I only get slightly sick from that.I would have shooting pains in many parts of my body, and no longer have the pain since being on a very, very strict diet. You may possible have other food issues which will take time to solve. My blood tests for gluten were negative, stool testing positive. It will take some investigating, but eventually your health will improve.

[ravenwoodglass]

Your neuro is as clueless as mine was. It may take some time to heal but you can heal your neuro issues that are gluten related on the diet. It did take a couple of months for me to see any difference but by six months I could walk unaided by canes or walls for the first time in literally years. I had neuro symptoms for almost 25 years before gut symptoms seemed anything out of the ordinary. Your blood work is positive so do go gluten free as soon as all testing for celiac is done. Be patient with your body and some sublingual B12 may help the process along.

[curiousgirl]

I am scheduled for biopsy Aug 31. My symptoms have been bad neuropathy,anxiety, depression, weight loss (25 pounds since Feb) no appetite, some nausea,but no real GI symptoms like D though...My B12 and Iron were marginal and vit D was a little low. This all started in Feb of this year.
Went to neurologist for the neuropathy and he scheduled the celiac tests (along with a bunch of others), where I had a ttg>200 (normal <10) IgA gliagin 24 (normal <11) and IgG Gliadin 38 (normal <11).
Neurologist thinks something else is going on, said it definitely wasn't celiac (and is sending me to a rheumatologist because of an ENA result ) and says "well, even if it is celiac, going gluten-free won't help your neuropathy because you have no GI problems". I literally sat in my car and cried for 1/2 hour after that appointment.

Then at work on Thursday, my boss says to me after commenting on my huge weight loss "well, hopefully they have ruled out cancer, there are lots of markers for that these days". So when I said we were focusing on the Celiac right now, she said "well, I don't know....".

I went gluten-free for a month and felt like crap, anxiety, joint pain, awful (from late June to late July and I was MILITANT) but am back on gluten for the biopsy (it will be 5 weeks) and feel no worse. I am scared that I will never feel better. I wish that people, if they have nothing supportive to say just keep quiet.

Do you have muscle wasting along with neuropathy??????

[cassP]

UNBELIEVABLE- i prolly would have been a real sarcastic B***H if that was my neurologist- what the HEY?????

ALL your numbers are CLEARLY positive!!!!! get your biopsy ASAP- and then go Gluten Free- it's time for you to be on your journey to perfect healing-

JUST RIDICULOUS- i just cant believe the ignorance-
people just dont know anything about Celiac over here in Corporate run U.S.A.

i recently had dinner with my DISTANT British relatives.
my (2nd uncle?) asked me if i liked the pasta- i said i couldnt eat any gluten... and he replied "Oh is it Celiac?"
it was such a nice change to hear someone know what it was & not have to explain it all.

try to brush the uneducated remarks off- you'll be on the road to feeling better real soon

[adab8ca]

Do you have muscle wasting along with neuropathy??????

my neuropathy seems to be small fiber, so no muscle wasting that I am noticinf, just pain pain pain...

[adab8ca]

UNBELIEVABLE- i prolly would have been a real sarcastic B***H if that was my neurologist- what the HEY?????

ALL your numbers are CLEARLY positive!!!!! get your biopsy ASAP- and then go Gluten Free- it's time for you to be on your journey to perfect healing-

JUST RIDICULOUS- i just cant believe the ignorance-
people just dont know anything about Celiac over here in Corporate run U.S.A.

i recently had dinner with my DISTANT British relatives.
my (2nd uncle?) asked me if i liked the pasta- i said i couldnt eat any gluten... and he replied "Oh is it Celiac?"
it was such a nice change to hear someone know what it was & not have to explain it all.

try to brush the uneducated remarks off- you'll be on the road to feeling better real soon

thank you...i was so overwhelmed by the neuro, all i could do was cry.
and i am actually in canada, so with our health care, it takes FOREVER for anything to happen.
June 7, my GP got the blood work and scheduled the referral to the GI.
GI appt. for a CONSULT only was going to be Aug 31st and the biopsy scheduled sometime after (usually a few months)...somehow they moved the biopsy up to the 31st w/o a consult and coincidentally, I was to have a colonoscopy in November (routine, my dad died of colon cancer) so I am actually getting both at the same time. I never wished for someone to find a disease in me so much in my life. I used to be so healthy and active and now I am just a mess.

thank you everyone for your support and comments and advice. i have been living in a nightmare where no one seems to understand how bad it is. my clothes are LITERALLY falling off of me and i have no energy at all to go shopping...and people have ACTUALLY said "people would LOVE that problem of weight just falling off for no reason no matter what you eat!"

hugs to you all
ada

[ravenwoodglass]

...and people have ACTUALLY said "people would LOVE that problem of weight just falling off for no reason no matter what you eat!"

hugs to you all
ada

I hate comments like that also. The last person that said that to me hit me on a bad day and I replied, 'Yea I am sure you'd just love to almost die so you could be skinny' That shut her mouth real quick.
I do hope they give you some conclusive results but please do the diet no matter what the results of the tests. False negatives are all too common. You can start the diet trial the day the procedure is done. Have patience as it can take some time to heal.
Wishing you the best.

[vbecton]

...and people have ACTUALLY said "people would LOVE that problem of weight just falling off for no reason no matter what you eat!"

I'm with ravenwood. If someone says that comment on a bad day, I'll blow a gasket. In fact, last week I went to the hospital lab for my monthly blood work (vitamin levels, etc...) and the intake lady looked at my lab sheet and said, "oh, 'weight loss', that's a convenient problem...poor you!" And she was very sarcastic. I kindly replied, with a sweet smile, "I'm happy to switch places with you for a week and you can have my explosive, uncontrollable D, muscle aches, and chronic nausea after every meal."

I hope you get your answers. I'm not as shocked that an intake lady at the hospital was so insensitive about my medical issue as I am about a neurologist who clearly is uneducated. That's a scary realization!

[ravenwoodglass]

I hope you get your answers. I'm not as shocked that an intake lady at the hospital was so insensitive about my medical issue as I am about a neurologist who clearly is uneducated. That's a scary realization!

Me too. IF my neuro hadn't been so clueless about my brain lesions it would have saved me years of pain and continued degeneration. My neuro is the only doctor that I ever considered sueing. I didn't though as that just isn't me.

[gf_soph]

I think with specialists who are behind the times, they need the scientific evidence to consider changing their minds.

The paper that TH linked to is a good one, there is another I saw, reference is
Neurologic Presentation of Celiac Disease, KHALAFALLA O. BUSHARA, GASTROENTEROLOGY 2005;128:S92–S97.
There are references to papers in there linking neurological disease with celiac since 1966, so it's hardly a new concept!

The section on neuropathy stated that resolution of the sytmpoms doesn't always happen with the gluten free diet, but it can happen, as other members of the board will attest. Even if the resolution is unclear, you certainly wouldn't choose to go on damaging your body when it could be the cause.

If you can access the 2 articles, I would print them out and give them to the neuro. Or at least write out the links and references to point them the right way.

Hope you are able to get sone clearer answers from your specialists, they can be a very tiring bunch to deal with.