Really Scared- Please Any Advice/experience!?

[bny06]

I have been gluten free for 4 weeks now..... when i started going gluten free I noticed My right knee felt a little weak.. then two weeks ago my wrists felt weak and numb.. then I noticed last week my thumbs and other fingers were actually weak - loss of dexterity and pushing buttons my fingers kind of fold up on me.. i'm a 30 year old female, so I know ALS isn't likely in my age group.. I have kept the fear in the back of my head for weeks.. until today when i went to see a neurologist.. He said he was concerned for ALS (we will have more of a workup on monday)... I am obviously panicking now..

THe only thing I don't understand .. how could i have lost 16lbs, had sudden change of bowel habts (going from once if that a day to 12 or more times, abd pain etc) and be diagnosed with celiac and then have ALS onset at the same time??? My husband and I were wracking our brains- obviously trying to figure out a different explanation.. I did start increasing my B6 dosage on accident (there was an addistional 100 in my new gluten free multivitamin) I started taking a new B complex and was also taking my usual B vitamins i've taken for years (for a blood clotting disorder)

Can a B6 toxcity mimic als?? with the weakness and everything? I have all over muscle twitching and cramping as well - my magnesium level was normal, and awaiting on vitamin D... ANY advice/experience is greatly appreciated.. I have two kids under the age of 2 and i'm so upset right now..

[YoloGx]

I have been gluten free for 4 weeks now..... when i started going gluten free I noticed My right knee felt a little weak.. then two weeks ago my wrists felt weak and numb.. then I noticed last week my thumbs and other fingers were actually weak - loss of dexterity and pushing buttons my fingers kind of fold up on me.. i'm a 30 year old female, so I know ALS isn't likely in my age group.. I have kept the fear in the back of my head for weeks.. until today when i went to see a neurologist.. He said he was concerned for ALS (we will have more of a workup on monday)... I am obviously panicking now..

THe only thing I don't understand .. how could i have lost 16lbs, had sudden change of bowel habts (going from once if that a day to 12 or more times, abd pain etc) and be diagnosed with celiac and then have ALS onset at the same time??? My husband and I were wracking our brains- obviously trying to figure out a different explanation.. I did start increasing my B6 dosage on accident (there was an addistional 100 in my new gluten free multivitamin) I started taking a new B complex and was also taking my usual B vitamins i've taken for years (for a blood clotting disorder)

Can a B6 toxcity mimic als?? with the weakness and everything? I have all over muscle twitching and cramping as well - my magnesium level was normal, and awaiting on vitamin D... ANY advice/experience is greatly appreciated.. I have two kids under the age of 2 and i'm so upset right now..

Hi Bny,

Its very possible that you either have either a or some additional food sensitivities due to leaky gut syndrome -- now uncovered due to your going off the gluten (gluten flattens or scars the villi creating leaky gut). Or you might have what I have: phenol and/or salicylate sensitivity. Both salicylate sensitivity and gluten intolerance/celiac create damaged villi and thus leaky gut syndrome often with a resultant host of other sensitivities. If you have both, nerve involvement is a common byproduct.

The thing that clues me in for the latter salicylate/phenol possibility is B6 sensitivity which I was just reading about concerning phenol sensitivity earlier today. As well as the twitching and other nerve problems etc. Apparently grown ups can get it; it isn't just kids like the AMA seems to often think.

The nice thing to realize is that diet can really help you. The not nice thing is that it involves umpteen different foods and spices etc.

Fortunately they have these new products that help one deal with phenols better. One is called No Fenol which you can order online. There are others. Taking regular epsom salt baths really helps too--though be careful to start with a small amount in your bath water before gradually upping the dose. Eventually if you have this condition and stay on diet and take the baths and use the No Fenol, the good thing to know is eventually you will very likely become less reactive and can gradually expand your list of OK foods to eat.

I'll send you another post with useful links if you are interested. The salicylate forum is particularly useful, both for lists of acceptable and not acceptable foods -- as well as another place to share information and get support.

The good news is you will get better, whether it is that you simply have a number of other food and chemical sensitivities in addition to the gluten intolerance or if you also have this phenol/sals sensitivity. No matter what, it is very likely you do not have Als. The coincidence of these symptoms occuring now really points IMHO in this direction.

Being off the gluten may seem like a pain given what you are suddenly going through, however it is really overall much better for your health to get to the bottom of these conditions rather than skating barely by on thin ice with other really unpleasant or possibly dangerous conditions gradually building in the background. I know from experience having been a very good skater so to speak. Be glad you are discovering this now rather than 30 years hence. You will no doubt gain a whole new lease on life.

Bea

[pricklypear1971]

Open Original Shared Link

[Takala]

Twitching? Cramping ? Do not panic. You have only been diagnosed for 4 weeks, and it takes a lot longer for the healing to normalcy (or close) to begin. After all, it took years for you to get that way.

Do google search celiac ataxia, celiac neurological symptoms, celiac thyroid symptoms, thyroid ligament syndrome, thyroid tendon. Celiac is the great mimicker of other diseases. As you approach gluten free status without cross contamination, you will become, ironically, more sensitive to gluten. Welcome! You really are more likely one of us.

I won't give you the entire sturm und drangst viking saga (an old saying of a friend when requesting the cliff notes version) of me and neurologists, but .... they really can be full of ****.

I have as the "base model" version of a body one that is athletic and powerful and flexible, if it were not really screwed up by auto immune diseases. So this really, in retrospect, I think helped screw up any attempt by neurologists to take seriously what I was describing to them, because I am also female, and you know how we are all just head cases saying things for attention, right ? Jerks.

I have as a side effect of the arthritis (which is caused likely by the gluten intolerance) an ongoing inflammation of the connective tissue where the tendons attach to the bone. I also have narrowing of the spinal canal (stenosis) and some blown discs in my neck. I don't take meds and I can still walk, altho my balance is really interesting if I don't constantly work on it constantly, and be really careful with my diet. I also had "bright spots" lesions in my brain. Don't forget the bright spots in my brain supposedly did not cause any symptoms nor have a cause in of themselves! (another sign of celiac, which I do not "officially" have). I have explained all this to many physicians, (along with the underperforming thyroid symptoms which are still testing out as "normal") and still get this look like I'm making this up, unless I have written copies of all tests showing some of this. The look is not "you can't have this" now. The look is "are you serious about the neurologist not believing this?"

It took me several years to get rid of the numbness in my hands and there still some permanent nerve damage in my shoulder and upper arm muscles where it's a bit numb from my neck being screwed up. But, because I am other wise a strong person, .... this can't possibly be so. Last year, I finally got much feeling back in my feet and lower calves, enough that I went back to driving a manual transmission car sometimes for fun, which I had given up about 10 years previously. I have ridden horses without being able to feel my feet for years, it makes you really want to use those breakaway stirrups, just in case. It's too bad my hips can't go numb the way other parts did, now THAT would be handy. I still can do things slowly, but I have to be really careful with my knees and ankles, otherwise they wobble.

Do get copies of your test results.

I will hope for the best for you, that this is just all celiac related damage that is reversible. Do make sure that everything that goes into your mouth is gluten free, including vitamins and supplements. You will need those for the malnutrition.

[bny06]

Thank yall so much.. I am just beside myself with anxiety with this whole thing.... I just so badly wanted the neurologist to tell me "oh no, of course it's not ALS", but when I saw the look on his face with some of my tests/reflexes and then the mention of those three horrible letters, I have since been a mess!!

Do yall know if my B12 levels were "off the charts" - in the 1000's.. do you think that would also mean I'm absorbing B6 that well too?? Also the thing that freaks me out is I cna't find any B6 toxicity information that says you have actual muscle weakness (i have true thumb and finger weakness.. constant x 2 weeks

Yolo- thank you! with salicylate sensitivity. does that mean i'd be sensitive to asprin?? I take a daily baby asprin for a blood clotting disorder (they found when I had lots of miscarriages)

Thank yall.. and please any other advice/experiences may help calm my freaking out that is currently happening!!!

[bny06]

Takala.. thank you.. Yea I know my dr kept asking me about my stress level, and the only thing I could say was the only thing stressing me out is this whole issue! When I saw the neurologist and they took me so seriously and scheduled the EMG for first thing monday morning (the soonest they could do it) though i'm glad they took me seriously, it also freaked me out more.... Did you ever have actual weakness??? I had generalized muscle "fatigue" for months, but this hand and thumb weakness has been constant jello fingers (the tips of them/the last joint and whole thumb) for 2 weeks.. I will gladly never touch a single bit of gluten or whatever else it takes if i can get cleared of a ALS diagnosis on monday.. I"m scared! My MRI was clean.. I'm wishing there were spots on it so i could at least be less concerned about als that way...

[AVR1962]

Bea's advise is excellent. To me it sounds like your body is depleted of vitamins and minerals and I would say that probably something else is upsetting your system. If you have not gone off dairy it would be a good idea until your body heals. I went to a low acidic diet which follows the low salicylate diet which really has helped me with my healing process. Both can be looked up online and are very easy to follow.

Another thing is getting enough nutrients for the body which you may not be able to do with foods alone. If you are having stomach issues (GERD), take something to help protect the stomach. Doc can give you a prescribed acid reflux med. I didn't feel any reflux but I sure had the burn going on in my stomach and that has to heal. I was on meds for 5 months, it is a slow process but one well worth it!

Here is what I am taking which I'll list here in hopes that it might help you as well. You have to decide what works best for you and experiemtn with that. If you are having trouble with B vits you'll have to find a way to get it in your body as that is more than likely part of the problem with the tingling and numbness you are feeling.

When taking supplements, take 4-6 hours after any prescribed meds (except acid reflux meds) as there are components in both that can make them bind to one another and make your meds less effective. All vits should be taken with a meal to help encourage absorbtion. Do not drink soda with a meal if you are having iron issues. Have read that all caffeine should also not be consumed with meals, depends who is writing the article it seems.

Vit D- (3800 IU total daily) to help absorb calcium, irritability and dizziness or vertigo, crawling sensation on skin, joint pain, poor concentration, memory

B Complex, WSN Nerve Support Formula (4 daily) each contain thiamine- 103mg, Methyl B12- 1000 mg, B2- 2 mg, B6- 2 mg, folic acid- 100 mcg, B3- 250 IU for tingling in hands or feet, hot feet, anemia, nerve damage, neuropathy issues

Magnesium- (250 mg, 2-3 daily) for confusion and poor memory, fatigue, disturbed sleep/insomnia, irritability, muscle twitching, muscle contraction. GOOD FOOD SOURCES: legumes, tofu, nuts such as almonds and hazelnuts, brown rice, dark leafy greens

Zinc- (35 mg) supports immune system, hair loss, taste. GOOD FOOD SOURCE: meat, liver, seafood, legumes, soybeans, whole grains

Potassium- (99 mg, 1-2 daily) regulate nerve transmissions and muscle contractions, restless legs, charlie horses

Iron- (vitamin c- 60 mg, folic acid- 400 mcg, B12-8mcg, iron- 28 mg) Vitamin C in citrus fruits, berries, dark leafy veggies help absorb iron.

[Takala]

Yes, my hands went numb all the time, especially when I was trying to sleep, and I fumbled and dropped things, and they shook and tremored. I held my coffee cups with 2 hands so I didn't dump it on my self. Typing was very difficult. I was also tripping and limping and dragging one foot, a lot.

Have to do exercises to help strengthen all the muscles to provide support, still. If I strain my neck or it gets held in the wrong position for long, it can mess them up. But it is also ongoing tendonitis. You're fortunate you seem to at least be getting tested relatively quickly, this whole experience has permanently soured me on HMO's and the entire U.S. forced- scarcity system to drive up profits, crooked insurance industry forcing many doctors into unethical behaviors.

[ravenwoodglass]

You have only been gluten free for a month. Do not let this doctor worry you too much. You still have a lot of healing to do. I had so many dire things that they thought was wrong with me and it turned out that pretty much everything was related to celiac. Can't say for sure that will be the case for you but chances are good that things will improve once you have been gluten-free for a bit longer.

I had EMG testing done a few years before diagnosis. I had lost all reflexes in my legs in childhood and my right leg by that time had extremely decreased movement. When they did the EMG my right leg was 'flat lined' and the tech freaked out. My neuro at the time was clueless and was actually angry about the test results because she thought I was just faking stuff to get disability. I wasn't and was at that time working over 40 hours a week. Long story short, within a couple years gluten free I had not only regained reflexes but I could also move my leg normally. Now I can't say for sure that celiac is causing your issues but if the tests do turn out abnormal don't lose hope. Doctors just don't realize how much celiac can affect nerve activity.

[bny06]

thanks so much for all the advice.... I go for the emg tomorrow and i'm absolutely besides myself terrified...

[bny06]

thank yall so very much for all the advice.... we recieved GREAT news this morning - no ALS!!!! Phewww!!!! I had minor nerve damage on my leg that he says will resolve.. from the weight loss irritating my nerves the way i sit.. but no signs of ALS.. THank God!!! So now i'm just hoping my sypmtoms at least don't worsen much more, and hopefully improve.. but no als, is probably the best thing i've heard my whole entire life!!!

[cahill]

thank yall so very much for all the advice.... we recieved GREAT news this morning - no ALS!!!! Phewww!!!! I had minor nerve damage on my leg that he says will resolve.. from the weight loss irritating my nerves the way i sit.. but no signs of ALS.. THank God!!! So now i'm just hoping my sypmtoms at least don't worsen much more, and hopefully improve.. but no als, is probably the best thing i've heard my whole entire life!!!

That is WONDERFUL news,, CONGRATULATION

I would like to mention that some of your "issues" may resolve with being gluten free.My ataxia has GREATLY improved since going gluten free.

[ravenwoodglass]

thank yall so very much for all the advice.... we recieved GREAT news this morning - no ALS!!!! Phewww!!!! I had minor nerve damage on my leg that he says will resolve.. from the weight loss irritating my nerves the way i sit.. but no signs of ALS.. THank God!!! So now i'm just hoping my sypmtoms at least don't worsen much more, and hopefully improve.. but no als, is probably the best thing i've heard my whole entire life!!!

That's good news and the issues should resolve once you have had some time to heal. Glad the doctor set your mind at ease. Maybe hard to believe but someday you may feel that the celiac diagnosis was actually the best news you had ever heard. I hope you heal quickly and are feeling better soon.

[bny06]

thank yall!! Yes ravenwood- After fearing the absolute worse I think simply staying away from gluten is the best daignosis ever!!!! It has been quite a mind trip the past week or so! Everything else is getting so much better- my stomach, bowel habits, gaining weight and my hormones finally are getting back into order (I didn't have a period for a long time due to the stress and weight loss on my body i guess)... So now I Just need this neuro stuff to either improve or not get worse and I'm good and avoiding gluten forever more!!!

[adab8ca]

thank yall so very much for all the advice.... we recieved GREAT news this morning - no ALS!!!! Phewww!!!! I had minor nerve damage on my leg that he says will resolve.. from the weight loss irritating my nerves the way i sit.. but no signs of ALS.. THank God!!! So now i'm just hoping my sypmtoms at least don't worsen much more, and hopefully improve.. but no als, is probably the best thing i've heard my whole entire life!!!

Oh I feel your pain!!! I had such weakness in my hands etcetc I was terrified of ALS or MS and of course, it is the hideous CELIAC. What a freaking RELIEF!!!

Now you can relax and start to really heal! I know the joy you are feeling

[adab8ca]

Twitching? Cramping ? Do not panic. You have only been diagnosed for 4 weeks, and it takes a lot longer for the healing to normalcy (or close) to begin. After all, it took years for you to get that way.

Do google search celiac ataxia, celiac neurological symptoms, celiac thyroid symptoms, thyroid ligament syndrome, thyroid tendon. Celiac is the great mimicker of other diseases. As you approach gluten free status without cross contamination, you will become, ironically, more sensitive to gluten. Welcome! You really are more likely one of us.

I won't give you the entire sturm und drangst viking saga (an old saying of a friend when requesting the cliff notes version) of me and neurologists, but .... they really can be full of ****.

I have as the "base model" version of a body one that is athletic and powerful and flexible, if it were not really screwed up by auto immune diseases. So this really, in retrospect, I think helped screw up any attempt by neurologists to take seriously what I was describing to them, because I am also female, and you know how we are all just head cases saying things for attention, right ? Jerks.

I have as a side effect of the arthritis (which is caused likely by the gluten intolerance) an ongoing inflammation of the connective tissue where the tendons attach to the bone. I also have narrowing of the spinal canal (stenosis) and some blown discs in my neck. I don't take meds and I can still walk, altho my balance is really interesting if I don't constantly work on it constantly, and be really careful with my diet. I also had "bright spots" lesions in my brain. Don't forget the bright spots in my brain supposedly did not cause any symptoms nor have a cause in of themselves! (another sign of celiac, which I do not "officially" have). I have explained all this to many physicians, (along with the underperforming thyroid symptoms which are still testing out as "normal") and still get this look like I'm making this up, unless I have written copies of all tests showing some of this. The look is not "you can't have this" now. The look is "are you serious about the neurologist not believing this?"

It took me several years to get rid of the numbness in my hands and there still some permanent nerve damage in my shoulder and upper arm muscles where it's a bit numb from my neck being screwed up. But, because I am other wise a strong person, .... this can't possibly be so. Last year, I finally got much feeling back in my feet and lower calves, enough that I went back to driving a manual transmission car sometimes for fun, which I had given up about 10 years previously. I have ridden horses without being able to feel my feet for years, it makes you really want to use those breakaway stirrups, just in case. It's too bad my hips can't go numb the way other parts did, now THAT would be handy. I still can do things slowly, but I have to be really careful with my knees and ankles, otherwise they wobble.

Do get copies of your test results.

I will hope for the best for you, that this is just all celiac related damage that is reversible. Do make sure that everything that goes into your mouth is gluten free, including vitamins and supplements. You will need those for the malnutrition.

I just have to say wow.

We have a saying in our house that when things go really bad, you are in a s**t hailstorm and your story is one of the worst hailstorms i have stumbled upon...I thought mine was bad but this is shocking. I am so, so sorry that you have had to deal with all of this. Being a medical mystery is just the worst nightmare ever...I really really wish you the best of health and continued recovery.

[bny06]

Thank you... haha.. yea it has defintely been a bit of a hailstorm around here.. we have kept saying - we can't wait till everything gets back to "normal" for a while, boy am I ready!!! I"ll take just not getting worse, and hhopefully a little better though!

adab8ca how long did it take for the weakness in your hands to go away??? EVerytime i do anything with my hands/ends of my fingers its just this awful feeling of weakness etc which by the end of the day I get frazzled and worried that maybe something worse is going on... ugh, such a mind game inside my head!! ha... I"m just ready to see definte improvement, or at least a while without definte weakness so I can relax a bit more...

I just about had a heart attack- I went to the Neuro dr yesterday and he looked at the EMG and said the other dr had completely misinterrpreted the EMG, that it was not normal afterall - that it showed diffused damage---- just imagine the panic that I started feeling - I think my heartrate shot up .. but then the neurologist followed with that kind of damage isn't consistent with ALS or MS, but instead peripheral neuropathy of some sort.... HE believes I have a GUillian Barree variant (a chronic form that causes peripheral neuropathy -sensory and motor) and that it can take 6 months to a year to improve.. of course he discounted celiac as a cause right off the bat.. so who knows..from reading on here, it seems that so many other people have similiar symptoms.. I couldn't even feel him touching my legs with the "cold" object until he got up to my thighs... so crazy - i'm only 31 and he said my nerves looked like a 90 year old on the EMG/NVC tests..

So I'm still a little freaked out... not knowing if this is going to get worse before it gets better etc... So I guess only time will tell... as long as it's nothing too horrible like ALS I can handle it, but i'm still a little scared for sure....

[ravenwoodglass]

Try not to freak out too much about the EMG. Your nerves should heal if not to normal then likely to near normal levels. You might want to call your neuro and ask if he can give you a script for physical therapy. That might help a bit with speeding along your strength and dexterity.

I went from Canadian canes or walls to walk, flat line EMG's on my leg and no reflexes in my legs since childhood to being able to run up the stairs at 6 months. The healing can be so gradual that you don't realize it is happening until one day you do something without thinking and realize that you couldn't have done that or felt that in a long time.

Get good nutrient dense food and take the sublingual B12s and what ever other supplements your body needs and hard as it is try to be patient. I hope you heal quickly. Try not to worry.

[bny06]

ravenwood: Thank you so much!!! Wow hearing your story helps me calm down for sure.. you say your emg had flatlines in it - when the neurologist read my emg (a physiatrist had performed it) he actually said " see look your almost flat lined " on three limbs.. it's just crazy that this can all happen so fast.. and be related to a thought to be only "gi" issue.. I asked him about occupational therapy/PT - my job requires very fine motor skills .. thankfully i work with understanding people who are helping me out at the moment. But he said that he couldn't really appreciate any clinical weakness (even though the EMG showed it and I was telling him I have it). that since i don't have actual wrist or foot drop etc.. no need for PT, that I can just exercise at home.. My husband and I both think that it would be beneficial to go to OT/PT so that in the least I could hopefully track that I am in deed improving, not worsening, just for my sanity sake!! I may ask my PCP for a PT scrip anyways.. It's not like it is going to hurt!!!

When did you first start noticing improvement, even the slightest do you think? I'm 5 weeks out (granted this all started 5 weeks ago too - the neuro part of it)... I am still awaiting my B6 level (5 weeks ago i stopped breastfeeding and changed to a new multivitamin and B supplement in addition to the 100mg of B6 I had been taking for 3 years- oopps!!! they think between my intestines healing up and no longer excreting it into my breastmilk I may actually have B6 toxicity)!! so who knows!!it's all crazy, and definetly plays mind games on me!

[domesticactivist]

I'm glad to hear your dr did testing right away. You still have the issue, though, so I want to throw another possibility out there. If it comes and goes it could be related to hypoglycemia. I don't have celiac but went gluten-free for my son. The first month all my neuro stuff got much worse. We went on the GAPS diet, which really helped my blood sugar get on an even keel. Now I notice that my neuro stuff comes back if I let my blood sugar spike and fall.

[domesticactivist]

I didn't see the second page with more info... It sounds very different from what I've experienced.