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Gluten issue OR ms??

Rosemilyd

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Rosemilyd Apprentice
Rosemilyd
Posted

 Hello I am asking for my husband seeing as how I'm the one who tends to him ha ha!  Has anyone had trouble getting diagnosed with gluten issues ?  My husband's doctor seems to think he could have MS or gluten issues wondering if anyone is in the same boat.

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kareng Grand Master
kareng
Posted

It is pretty easy to get a blood test for Celiac.  IF your doctor thinks he might have "gluten issues" why doesn't he start there?

Rosemilyd Apprentice
Rosemilyd
Posted
  • Author

He did get a celiac panel done yesterday we are just playing the waiting game.  The bad thing is the doctor said a lot of times you get a false negative's with the gluten test so I was just hoping to talk to someone about it he's had MRIs and blood work done and all that but the uncertainty ways on your mind. He's only 26 

artistsl Enthusiast
artistsl
Posted
2 hours ago, Rosemilyd said:

 Hello I am asking for my husband seeing as how I'm the one who tends to him ha ha!  Has anyone had trouble getting diagnosed with gluten issues ?  My husband's doctor seems to think he could have MS or gluten issues wondering if anyone is in the same boat.

If everything comes back negative I urge you to try avoiding gluten anyways. My son tested negative for celiac, twice, but we tried eliminating gluten anyways to see if it would help. He is now completely cured from his movement disorder and psychiatric complications. We've been to the Mayo Clinic to try to find answers. They said they don't understand the mechanisms behind it or what biomarkers to look for, but have since offered to do a gluten challenge and then a spinal tap. I guess they would like to see whether they can find the antibodies in the spinal fluid. My son is five years old so we're going to hold off on attempting an invasive procedure for now. But maybe that's something your neurologist may want to consider. Either way, I feel you have nothing to lose from trying the diet elimination. There is only the potential for gain. Good luck to you guys in finding answers.

Rosemilyd Apprentice
Rosemilyd
Posted
  • Author
2 hours ago, artistsl said:

If everything comes back negative I urge you to try avoiding gluten anyways. My son tested negative for celiac, twice, but we tried eliminating gluten anyways to see if it would help. He is now completely cured from his movement disorder and psychiatric complications. We've been to the Mayo Clinic to try to find answers. They said they don't understand the mechanisms behind it or what biomarkers to look for, but have since offered to do a gluten challenge and then a spinal tap. I guess they would like to see whether they can find the antibodies in the spinal fluid. My son is five years old so we're going to hold off on attempting an invasive procedure for now. But maybe that's something your neurologist may want to consider. Either way, I feel you have nothing to lose from trying the diet elimination. There is only the potential for gain. Good luck to you guys in finding answers.

Thank you so much for the response he has already had a spinal tap done amd MRI and that Neurologist said she did not believe it was a ms but he just recently got a new family doctor and he said that cannot determine ms at all and to ignore what she said so of course that took away every ounce of peace of mind that we had but we are starting gluten-free today I went to Aldis and bought a bunch of stuff thank you so much and  I'm very glad your son seems to be improving. What a blessing!!

ravenwoodglass Mentor
ravenwoodglass
Posted
2 hours ago, Rosemilyd said:

Thank you so much for the response he has already had a spinal tap done amd MRI and that Neurologist said she did not believe it was a ms but he just recently got a new family doctor and he said that cannot determine ms at all and to ignore what she said so of course that took away every ounce of peace of mind that we had but we are starting gluten-free today I went to Aldis and bought a bunch of stuff thank you so much and  I'm very glad your son seems to be improving. What a blessing!!

I was thought to have MS that turned out to be gluten ataxia. When someone has ataxia there are UBO's (unidentified bright objects and yes that is the medical term for them) that are very similiar to the lesions seen with MS. However with MS a spinal tap will show debris that will not be found with gluten ataxia.  Your new family doctor is not a Neurologist and should not be discounting what your neuro said. Make sure that the Neuro's records get to your new doctor. Neuro problems steming from gluten can take some time to resolve and I found I needed to be VERY strict with the diet to avoid backsliding. They will heal in most all cases but you need to be patient.  I should also mention that I did show false negatives on the old blood tests so even if blood work is negative it doesn't hurt to give the diet a strict try for at least 6 months after all celiac related testing is finished. Do be sure to read the Newbie 101 thread at the top of the Coping section as it will have a lot of important info to keep him safe.

Rosemilyd Apprentice
Rosemilyd
Posted
  • Author
On 5/19/2017 at 2:00 PM, ravenwoodglass said:

I was thought to have MS that turned out to be gluten ataxia. When someone has ataxia there are UBO's (unidentified bright objects and yes that is the medical term for them) that are very similiar to the lesions seen with MS. However with MS a spinal tap will show debris that will not be found with gluten ataxia.  Your new family doctor is not a Neurologist and should not be discounting what your neuro said. Make sure that the Neuro's records get to your new doctor. Neuro problems steming from gluten can take some time to resolve and I found I needed to be VERY strict with the diet to avoid backsliding. They will heal in most all cases but you need to be patient.  I should also mention that I did show false negatives on the old blood tests so even if blood work is negative it doesn't hurt to give the diet a strict try for at least 6 months after all celiac related testing is finished. Do be sure to read the Newbie 101 thread at the top of the Coping section as it will have a lot of important info to keep him safe.

Thank you for the great info! Did you have a lot of muscle aches, some numbness from time to time, bloating, that kind of thing ? 

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ravenwoodglass Mentor
ravenwoodglass
Posted
2 minutes ago, Rosemilyd said:

Thank you for the great info! Did you have a lot of muscle aches, some numbness from time to time, bloating, that kind of thing ? 

Yes but gut symptoms were fairly mild for a long time.  They did progress to total daily misery eventually.  I had a great deal of numbness and tingling in my hands but not as much in my feet and legs. I just lost balance and eventually one leg idin't function properly. It was a flat line on an EMG. A year or two before diagnosis I started having trouble with choking. I also had issues with aphasia and memory. After diagnosis it took a while to recover but I did mostly. I consider myself lucky that I only have a bit of residual damage since I was so far gone when finally accurately diagnosed.

Ennis-TX Grand Master
Ennis-TX
Posted

You will find magnesium, iron, potassium, and a full b vitamin regiment will help a TON with nerve and neurological symptoms, I also found a diet high in fats from seeds and nuts seem to improve mine. Nerve and ataxia symptoms can take a lot longer to heal and the side effects of a gluten poisoning last much longer with them (1-4 weeks slowly stepping down). With my celiac I get a combo of nerve and gut issues, nerve can be as bad as complete motor loss, to just numbness. My tingling issues resolved years ago with a high magnesium regiment 2-3 times the daily dose spread out over the day. The numbness stil is around a bit and goes and comes in waves, honestly on bad days I can drink 170+F beverage and not know they are hot or grab a pan out of the oven without noticing my finger tips slid off the pot holder and onto the pan. -_- You should see the scars/calluses on my hands. 

IF your still testing STAY ON GLUTEN, you have to be eating it for the test, they are testing for antibodies and damage. First the blood test for antibodies then they will follow up with a endoscope checking for damage to the villi in the small intestine. You have to be eating a small amount of gluten every day at least half a slice of bread or a few crackers a day, he can eat them at night to try to sleep off the worst of the effects. It is 12 weeks of gluten for the blood test MAKE SURE you request a FULL CELIAC PANEL, and 2 weeks I think for the endoscope and make sure they take multiple biopsies.

ravenwoodglass Mentor
ravenwoodglass
Posted

One thing I forgot to add was to try using a sublingual B12 in addition to any other supplements. Sublingual is important until your healed as your body may not be able to properly utilize a swallowed form. The sublingual will dissolve under your tongue and be rapidly absorbed. Do be sure to tell your doctor about any supplements you are taking since if they want to test your levels with blood work some you will need to stop for a bit to get an accurate reading.

jean9v Rookie
jean9v
Posted
Quote

Please have him and yourself go on the gluten free diet... if only for 2 weeks... record in a journal how he feels... and rate them from a scale of one to ten... bad to good.. on everything, his arms, legs, belly , head, digestion etc... Lots for fruits and veggies... and gluten free items as you go.. you will be surprised after the 2 weeks ... then bring out the journal and ask him to rate how he feels... I bet you he will be surprised... I had the terrible rash along with the digestive disorders... the itch was making me crazy... I had tried everything to scratching myself raw... long story short.. I went on the diet and within 3 days... the itch went away... and within in the 2 weeks... my husband could see how my skin was healing.... not to say, I was no longer planning my day around when I could leave the bathroom in the morning.... Give it a Try... You be surprised.... Good Luck..

 

 

notme Experienced
notme
Posted

a friend of mine, who has been diagnosed celiac, is also being tested for ms :(  she was hospitalized because they thought she had a stroke and she was having trouble using her left side.  it seems like every other day they are poking at her and testing her and changing her dx.  (i don't think she's doing the diet in 'detail' and i keep urging her to come here and ask questions, but all these doctors are taking a pop at her.....  :(  )  i'll ask if she's had a spinal tap, being as that was one of the questions she had:  whether celiac can *cause* ms, and if so, can it be cured/reversed.  poor kid, she is such a sweetie...

Pocah Rookie
Pocah
Posted

I have never been diagnosed officially as having Celiacs, because the blood test failed to show anything, but I can tell you most certainly I do have it! My symptoms are textbook. Unfortunately because the blood test didn't work I did considerable damage to my intestines before I realised what was wrong and changed my diet..which immediately changed everything for the good. I would recommend going on a gluten free diet for at least two weeks, it may well tell you far more than any blood test. 

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      My only proof

      By Mari · Posted

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    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

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    • trents
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      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

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      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

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