Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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


e320-cdi

Recommended Posts

ravenwoodglass Mentor

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



e320-cdi Newbie

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 Newbie

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 Apprentice

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 Newbie

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 Newbie

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 Newbie

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

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 Apprentice

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 :)

  • 2 weeks later...
e320-cdi Newbie

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 Mentor

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 Newbie

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

ravenwoodglass Mentor

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 Newbie

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 Mentor

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 Collaborator

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. Open Original Shared Link

e320-cdi Newbie

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 Collaborator

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 Collaborator

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. Open Original Shared Link Red meat from grass-fed beef, bison, or venison is actually pretty low-fat and is probably fine.

domesticactivist Collaborator

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. Open Original Shared Link 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 Newbie

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. :angry:

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

Skylark Collaborator

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. :lol:

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,346
    • Most Online (within 30 mins)
      7,748

    Thomas D Cosgrove
    Newest Member
    Thomas D Cosgrove
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Given your severe symptoms it sounds like you would be much better off going 100% gluten-free!
    • Ginger38
      Thank you for your kind words and encouragement. This has been the most difficult and confusing journey to date for me, and it has been going on since 2015/2016. The last dietitian I met with works with a lot of celiac patients, so I was excited, but she just thought I should be able to eat gluten free (whatever that may be) stay in a carb count and my diabetes would not be affected. WRONG. I have tried this several times since I crossed over to full blown diabetes, because I get so sick eating gluten that I end up getting frustrated and go back to gluten free to get some relief. I have a continuous glucose monitor so it is easy to see how my body and glucose are reacting to foods. Unfortunately my suspicions are correct. When I eat gluten-free foods -like Schar breads or rolls, or the crackers, including when I stay in my carb limit,  my sugar spikes and just sits there.. .it won;t even come back down for hours. So in the end it drives my overall glucose and A1C up. I can't really even eat oats or things like that. Cereal is very iffy. Gluten free pizzas, gluten free nuggets, and things like that majorly spike my sugar as well, again, even when staying in my carb limits. I already feel so limited on foods because of the diabetes so of course, when medical people and family and friends are like just go eat gluten, I have been like oh okay - maybe it is all in my head and hey its way cheaper to eat gluten and tastes wayyy better...and then I end up right back where I am today,. MISERABLE, just laying around in pain, spending all day in the bathroom, having accidents related to diarrhea, constant tremors, heart rate issues, chest pain etc. and I forgot about these terrible painful canker sores in my mouth right now, I can't even hardly eat or drink or swallow they hurt so bad.  Not being able to feel like I can eat gluten free is extremely frustrating. I had some great recipes and substitutes for things, and was at a decent place with all that, until the diabetes went crazy out of control, so gluten-free living seems to not be an option for me. However, eating gluten when I truly still believe I am celiac -just misdiagnosed- does NOT seem like a wise idea. I am honestly scared  I am going to get deathly ill from all this or something. I even asked my GI doctor, more like begged, if he would please just label me as celiac and tell me I was for sure (like he did before) so I could get the support I truly need. No such luck. He just keeps saying but your tests were okay 🙄 My family went to an arcade and pizza/pasta buffet yesterday - obviously I didn't want to miss out spending time with my family and my mom spent money paying for my meal/buffet - and I was hungry, so of course I ended up eating pizza and pasta that was not gluten-free, because they don't offer any gluten-free options, and then my brother and others want to ask can you eat that or are you supposed to, and I am like well no, and I will definitely pay for it. They think it is hilarious when I say things and then make comments, like how it is so fun to go out with me especially places like that because I am not supposed to eat but I just do it anyway and say I will pay for it 😥 just seems everywhere I turn it is pointless and I have no support 
    • Wheatwacked
      Just like you cannot be a little pregnant, you cannot be a little Celiac.  Here is an article I found that explains what the numbers mean. Are You Confused About Your Celiac Disease Lab Results? Here is another article about the non traditional symptoms of Celiac Disease. What Are the Symptoms of Celiac Disease? I've been taking 10,000 IU vitamin D3 since 2015.  My blood tests every 3 months for 25(OH)D have never gone above 93 ng/ml, even in the Florida summer.  70 - 100 is the body's natural homeostasis level. Surge of information on benefits of vitamin D "“When combined with supplemental magnesium, vitamin D repletion has dramatically changed my practice,” said McCarthy ... “There are now very few patients with infections, and asthmatics who are coming off medications are staying off of them. ... A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects; ... Colon cancer data showing a reduction in the incidence of new cancer (linear) with postulated 0 point at 75 ng/mL;
    • somethinglikeolivia
      Interesting! Recent labs I had done did show that I was low in Vitamin D so I just began supplementing, it’s hard to tell so soon but it does seem to have a positive affect! Thanks for the input!
    • Scott Adams
      Your frustration and exhaustion are completely valid, and many in the celiac and gluten-sensitive community can relate to the overwhelming confusion you're experiencing. You’re being pulled in different directions by medical advice that seems contradictory, and it’s heartbreaking that your efforts to feel better are met with so many setbacks. Positive TTG IgA antibodies are not something to brush off, especially when combined with your long list of debilitating symptoms that clearly worsen with gluten exposure. A negative biopsy does not necessarily mean you don’t have celiac disease—it’s entirely possible that damage was missed, especially since biopsy results can vary depending on where the samples are taken and how many are collected. It’s also true that celiac disease exists on a spectrum, and many people have serious symptoms and immune responses without yet showing classic biopsy damage. Managing diabetes alongside suspected or confirmed celiac disease is incredibly tricky, especially when healthcare providers don’t work as a team to support your whole health. You shouldn’t be forced to choose between controlling your blood sugar or protecting your gut and immune system. A well-planned gluten-free diet can be both nourishing and diabetes-friendly, especially with guidance from a knowledgeable dietitian who understands both conditions. It’s also deeply concerning that your symptoms—neurological issues, severe fatigue, GI distress, rashes, and more—are being dismissed. You’re not just describing discomfort; you’re describing a level of illness that’s life-altering, and your instincts that something is seriously wrong are absolutely worth trusting. You know your body better than anyone. You deserve a team that listens, believes you, and helps you build a realistic, sustainable path to healing. Whether it’s celiac disease, non-celiac gluten sensitivity, or something else, you have every right to go gluten-free permanently if that’s what makes you feel functional. Many people never get a “perfect” diagnosis but reclaim their health by honoring their own experience and choosing a path of least harm. You are not crazy, you are not weak, and you are not alone. Keep advocating for yourself—you and your daughter both deserve a healthier, more stable life.
×
×
  • Create New...