Was Diagnosed With Doctor Suspecting Ms, But I Wonder If It Could Be Celiac

[ravenwoodglass 1,413]

I went to my PCP today to follow up - the first time I have been since I came down with this illness. I was happy that Celiac was not considered initially, nor were vitamin levels. I had these blood tests run today, and should know something within a week. Very hopeful these test reveal something. I do know that I don't feel like I have to go to the rest room after I eat if I avoid gluten. So that is very positive right there!

Please be aware that if you have been gluten free your tests will come out negative for celiac. I hope if you are having blood work you have not been gluten free for long. If you have been gluten-free for more than a day or two you need to get right back on gluten for a bit before testing. Even on a full gluten diet you could still have false negative tests.

[e320_cdi 0]

Please be aware that if you have been gluten free your tests will come out negative for celiac. I hope if you are having blood work you have not been gluten free for long. If you have been gluten-free for more than a day or two you need to get right back on gluten for a bit before testing. Even on a full gluten diet you could still have false negative tests.

I did not eat gluten on Sunday or Monday, so two days. I felt so bad and had to miss so much work as a result of being sick I wanted to try something. So far my stomach has done much better as I have not had to go to the restroom right after eating.

It really sounds promising that this was my problem. I sure hope so!

I mentioned it to the doctor and also said that there were many false negatives with the test, and that two days in his opinion would not affect the outcome. We shall see!

[e320_cdi 0]

And here comes the headache! Around one eye and in the neck. Feels different than most but as some others describe. I really wonder how I will feel when this gets out of my system...

[NoodleUnit 4]

Out of interest does it feel like the muscles in your neck are tightening up? That's how it feels for me when I get the headaches and eye pain. I also get rapidly and extremely irritable.

It does sound to me as though you're homing in on at least a major culprit in your issues. It was a revelation for me when it happened so hopefully it'll answer a lot of your questions too.

[e320_cdi 0]

Out of interest does it feel like the muscles in your neck are tightening up? That's how it feels for me when I get the headaches and eye pain. I also get rapidly and extremely irritable.

It does sound to me as though you're homing in on at least a major culprit in your issues. It was a revelation for me when it happened so hopefully it'll answer a lot of your questions too.

Yes - that's exactly what it is like. Like the muscles in my neck are very tight. I typically don't get headaches like this so I attribute it to going without gluten for a few days. I do get headaches, and many times in the neck, but this one feels worse and feels tighter.

Luckily the eye pain subsided and it is mainly in the neck now. So some improvement.

[e320_cdi 0]

I was having all kinds of vision issues....blurred, double, striped pattrns were blinding, certain colors were too bright and hurt my eyes. Went to eye doc, eyes were fine, he suggested a diabetes test which I did and that turned out fine. Finally someone here on this site mentioned they tried cod liver oil for some of the same issues so I tried it. Took 3 a day like the bottle suggested and in a matter of days my vision improved. I no longer have any of the symptoms mentioned.

Did you happen to have any eye pain/redness with your symptoms? It seems as if my eyes are not producing the tears they once were and they are a little red.

[e320_cdi 0]

I just wanted to report that after a one week gluten free diet, I have not had D in a whole week. I am still awaiting my test results, but am very happy with what I am seeing so far.

Still waiting for the vertigo and eyesight to clear up, but I understand that may take some time.

[ravenwoodglass 1,413]

I just wanted to report that after a one week gluten free diet, I have not had D in a whole week. I am still awaiting my test results, but am very happy with what I am seeing so far.

Still waiting for the vertigo and eyesight to clear up, but I understand that may take some time.

Glad to hear this! I am sure you will continue to improve. When I was diagnosed I thought just the D would stop as I had no idea that all the arthritic pain and brain issues were celiac related. For me healing came in subtle ways at first but by six months I caught myself running up the stairs that I used to have to pull myself up. It still seems a miracle to me. I hope you continue to improve at a steady pace but we can have some ups and downs at first. Don't get discouraged if the eye and balance issues take a bit of time. I did find taking sublingual B12 seemed to help the nerves heal a bit more quickly. A script for a physical therapist was also helpful for me with the balance issues and that might be helpful for you also if your insurance will cover it.

[NoodleUnit 4]

Just to echo Ravenwoodglass. My nerve issues seemed to dissipate much more rapidly after heeding advice on here and taking a vitamin b complex supplement, which I am now taking again to try and help with the neuro issues which resurfaced after I went back on gluten prior to my own endoscopy.

They do a damn fine line in good advice here

[e320_cdi 0]

I just wanted to give an update to my tests and current condition. I am still gluten free and have not had near (or any, for that matter) stomach upset. The blood work, as expected, returned negative for celiac. I requested the results for the blood tests and am awaiting them. I was told that the B12 was "within range" but I don't have the numerical values, yet. I am going to get that. I was told that vitamin D was low and was actually prescribed vitamin D in 50,000 IU once a week for four weeks.

I have a new neurological symptom that has come up. As of last Thursday, I am getting double vision for just a few seconds when I change positions, almost like my blood pressure is dropping, but that doesn't seem to be what it is as I can't get a low reading. It happens when I am driving, laying in bed, etc. Before I get the double vision, I get a tingling feeling in my tongue a few seconds before. Then the double vision sets in for about 10 -15 seconds, and goes away. Shortly after that, the tingling goes away in my tongue. I am not sure what is the cause of that yet.

[ravenwoodglass 1,413]

I just wanted to give an update to my tests and current condition. I am still gluten free and have not had near (or any, for that matter) stomach upset. The blood work, as expected, returned negative for celiac. I requested the results for the blood tests and am awaiting them. I was told that the B12 was "within range" but I don't have the numerical values, yet. I am going to get that. I was told that vitamin D was low and was actually prescribed vitamin D in 50,000 IU once a week for four weeks.

I have a new neurological symptom that has come up. As of last Thursday, I am getting double vision for just a few seconds when I change positions, almost like my blood pressure is dropping, but that doesn't seem to be what it is as I can't get a low reading. It happens when I am driving, laying in bed, etc. Before I get the double vision, I get a tingling feeling in my tongue a few seconds before. Then the double vision sets in for about 10 -15 seconds, and goes away. Shortly after that, the tingling goes away in my tongue. I am not sure what is the cause of that yet.

If you haven't already do get the sublingual B12. Glad to hear the tummy issues have cleared up but be aware that it does take a bit longer for the neuro issues to resolve. Do get copies of the B12 levels. Doctors used to have the cut off at 250 but now they are saying the cut off before suppelements should be 500 but not all doctors are up on that. In addition we can register normal B12 levels for a long time after our bodies are unable to really utilize it. I was told my levels were 'within normal limits' when I was at 255. Supplements made an incredible difference even before I was gluten free.

[e320_cdi 0]

Will do. Will try to get those today do you have a recommended dosage?

[ravenwoodglass 1,413]

Will do. Will try to get those today do you have a recommended dosage?

I would get the highest dosage you can find easily. I have taken the 1000 and the 5000 levels. It will seem like a lot but there is no toxic level and any your body can't use will be excreted. Hopefully it will make a difference for you.

[e320_cdi 0]

I was able to find the 1000mcg and got them. Will let you know how they do! They also have B6 and Folic Acid.

[GottaSki 460]

My primary now runs the following tests on my annually - if I am not visiting my celiac doc:

tTG IgA

Iron, Ferretin, Copper & Zinc

Vits A, B1, B2, B6, B12, D, K

and if you haven't had the following tests, it might help rule out other autoimmune disorders:

ANA

Liver Panel

ALL Thyroid

Erythrocyte Sedimentation Rate

C-reactive protein

Lastly, do you have a severe reaction to hot or cold. Hard to get warm &/or overheat while exercising or in warm/humid weather? I ask this as many of my symptoms prior to removing several foods were similar to yours and now I only have this seemingly "broken internal thermostat".

[Skylark 938]

I was able to find the 1000mcg and got them. Will let you know how they do! They also have B6 and Folic Acid.

Studies show 1000 mcg/day will reverse a deficiency. Glad to hear you're at least having less diarrhea.

Maybe you already know this, but for nervous system damage you also want to eat animal fats and cholesterol generously. The myelin you are trying to rebuild is made of essential fatty acids and phospholipids you get in animal foods. It also makes sure you get enough of the fat-soluble vitamins like A, D, and K in their natural forms. Enjoy lots of real butter (no margarine, please), eat the skin on your chicken, have an egg or two every day for the brain-healing cholesterol and lecithin in the yolk, and take a fish oil supplement for omega-3 fatty acids. Sardines are even better if you like them. Avoid trans-fats like the plague, and never eat foods fried in big vats of heated vegetable oil. (Trans fats form with the heat - frying should be done in tallow, lard, ghee, or coconut oil in a pinch.) Sally Fallon's book called Nourishing Traditions is really good. It explains the health benefits of natural fats and how to get the most nutrition out of your food.

Have you gone off casein as well? There is a link between casein and type 1 diabetes, and some people think casomorphins (opiate-like peptides formed if you don't digest casein perfectly) may be generally bad for your immune system.

I'd also strongly suggest you look into low-dose naltrexone. If it is MS you're dealing with and not celiac, it may be helpful. http://www.lowdosenaltrexone.org/

[e320_cdi 0]

Lastly, do you have a severe reaction to hot or cold. Hard to get warm &/or overheat while exercising or in warm/humid weather? I ask this as many of my symptoms prior to removing several foods were similar to yours and now I only have this seemingly "broken internal thermostat".

I used to stay hot all the time and get a stomach ache. Now I don't get hot really at all, and stay cold more now. My hands do stay a little chilly.

[domesticactivist 109]

Maybe you already know this, but for nervous system damage you also want to eat animal fats and cholesterol generously. The myelin you are trying to rebuild is made of essential fatty acids and phospholipids you get in animal foods. It also makes sure you get enough of the fat-soluble vitamins like A, D, and K in their natural forms. Enjoy lots of real butter (no margarine, please), eat the skin on your chicken, have an egg or two every day for the brain-healing cholesterol and lecithin in the yolk, and take a fish oil supplement for omega-3 fatty acids. Sardines are even better if you like them. Avoid trans-fats like the plague, and never eat foods fried in big vats of heated vegetable oil. (Trans fats form with the heat - frying should be done in tallow, lard, ghee, or coconut oil in a pinch.) Sally Fallon's book called Nourishing Traditions is really good. It explains the health benefits of natural fats and how to get the most nutrition out of your food.

Skylark- you know I'm all about saturated fat and this thinking makes sense to me. However, I have a friend with MS who has been told she needs to stick to an extremely low-fat diet, which does seem to help her symptoms. I have read some studies backing that idea up. It seems very counter-intuitive to me, but I don't have data to back up another perspective. Enlighten me?

[Skylark 938]

Skylark- you know I'm all about saturated fat and this thinking makes sense to me. However, I have a friend with MS who has been told she needs to stick to an extremely low-fat diet, which does seem to help her symptoms. I have read some studies backing that idea up. It seems very counter-intuitive to me, but I don't have data to back up another perspective. Enlighten me?

I am glad to hear that your friend has found a diet that works for her!

The Swank diet is controversial. There are equal numbers of people with MS (which may be celiac) who have gotten well gluten-free/CF. Swank diet includes omega-6 fatty acids, which are inflammatory as well as omega-3. Part of the benefit may be getting rid of trans-fats and certain inflammatory fatty acids that show up in gran-fed, unhealthy feedlot beef. The thing that changed my thinking about saturated fat was Mary Enig's observation that almost every saturated fat study has failed to distinguish between hydrogenated vegetable oil and natural animal fat. On top of that, much of the saturated animal fat eaten today has an altered fatty acid profile from unnatural feed. You make a good point about dairy fat - diet for MS should probably be casein-free, which leaves only ghee. Casein combined with leaky gut is starting to look like a problem for EVERYONE with autoimmunity because of the casomorphin.

Swank diet will lower trans-fat, lower consumption of feedlot beef, and lower casein consumption because of the restrictions on cheese. These are all probably good things. Swank is also high in fish oil, which is tremendously important. I would be surprised if pastured eggs, organic ghee, or coconut oil pose a problem for people with MS.

Something like this would make the most sense, noting that the inflammatory animal fats are probably those from unhealthy animals. http://www.msnews.org/diet-and-multiple-sclerosis/ Red meat from grass-fed beef, bison, or venison is actually pretty low-fat and is probably fine.

[domesticactivist 109]

I am glad to hear that your friend has found a diet that works for her!

The Swank diet is controversial. There are equal numbers of people with MS (which may be celiac) who have gotten well gluten-free/CF. Swank diet includes omega-6 fatty acids, which are inflammatory as well as omega-3. Part of the benefit may be getting rid of trans-fats and certain inflammatory fatty acids that show up in gran-fed, unhealthy feedlot beef. The thing that changed my thinking about saturated fat was Mary Enig's observation that almost every saturated fat study has failed to distinguish between hydrogenated vegetable oil and natural animal fat. On top of that, much of the saturated animal fat eaten today has an altered fatty acid profile from unnatural feed. You make a good point about dairy fat - diet for MS should probably be casein-free, which leaves only ghee. Casein combined with leaky gut is starting to look like a problem for EVERYONE with autoimmunity because of the casomorphin.

Swank diet will lower trans-fat, lower consumption of feedlot beef, and lower casein consumption because of the restrictions on cheese. These are all probably good things. Swank is also high in fish oil, which is tremendously important. I would be surprised if pastured eggs, organic ghee, or coconut oil pose a problem for people with MS.

Something like this would make the most sense, noting that the inflammatory animal fats are probably those from unhealthy animals. http://www.msnews.org/diet-and-multiple-sclerosis/ Red meat from grass-fed beef, bison, or venison is actually pretty low-fat and is probably fine.

Thank you for your thoughts. I, too, have had the same impression about studies done on fats. Industrial fats are a bad idea, regardless of the source. They've studied THAT and then given all fat a bad name. So I'm curious... in our last exchange on the subject you were saying that while the GAPS diets emphasis on saturated fats was fine for kids, that it was risky for adults. Do you still feel the same, or have you changed your opinion?

[e320_cdi 0]

It seems to me that MS is commonly misdiagnosed when in fact celiac is the cause.

I am going to get another MRI in a little over 5 months to see how that looks. I local physician said that he had a patient and her brain was "full of plaque" and it cleared up after going gluten-free.

I have recovered greatly but I am dealing with the double vision after I cough, clear my throat, yawn, or sneeze. I still don't know the cause of that. On top of that, I have come down with a head cold which makes me sneeze that much more.

Other than that, my brain fog and other primary symptoms have gotten much better as well as my stomach.

[Skylark 938]

Thank you for your thoughts. I, too, have had the same impression about studies done on fats. Industrial fats are a bad idea, regardless of the source. They've studied THAT and then given all fat a bad name. So I'm curious... in our last exchange on the subject you were saying that while the GAPS diets emphasis on saturated fats was fine for kids, that it was risky for adults. Do you still feel the same, or have you changed your opinion?

I don't know what to think any more. The way dietitians break down foods makes my head spin. We clearly need a lot more fish and fish oil than most Americans get, and the neurosis about cholesterol has given eggs an undeserved bad name. Saturated fat in studies is mostly from either stockyard beef or cows that are bred to overproduce milk. It's high in inflammatory stearic acid and a lot of thinking is that heart disease is an inflammatory response. Also most of the saturated fat studies are confounded by the tendency of Americans to eat refined sugar and starch. Sugar and starch combined with saturated fat from stockyard cattle seems to be a quick way to get metabolic syndrome.

I figure if I'm going to eat saturated fat, I'll eat meat and eggs from healthy animals and GAPS-style carbs (i.e. fruit and veggies). Funny, healthy animals have pretty lean meat! I don't have to make a decision about milkfat since I'm intolerant to dairy right now anyway.