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New And Looking For Input.

solarpower

By solarpower
in Coping with Celiac Disease

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solarpower Rookie
solarpower
Posted

Hi all, I have been visiting this forum for months and finally decided to join. First off I am self diagnosed. After discussing my issues with a number of people (my chiropractor and celiac friends) I was told to try going gluten free. I had almost immediate improvements. Here is my story;

Almost a decade ago I started having acid reflux symptoms. When the reflux continued to get worse I sought medical help. I was immediately prescribed acid reducers. Medication provided almost no relief. I continued visiting doctors over the years and none were willing to help beyond giving me reflux medication. I have tried almost every reflux medication there is and none helped me. As the years progressed my symptoms got worse and worse. When I had finally gotten to a point were I was "regurgitating" almost everything I ate, frequent shortness of breath, dizziness, muscle and joint pain I gave up. I was severly depressed, contemplating suicide and out of work. When some concerned friends with celiac asked what my symptoms where they insisted I avoid gluten for a while and see how I felt. Within days of going gluten free I had vast improvements. My reflux all but disappeared, my muscle and joint pain dissipated. I started feeling happier and more alert. I did this for several months until I started feeling tired all the time. I setup a visit with a gastroenterologist. The doctor wanted me to go back on gluten before issuing me the test. I tried it for 3 days before having to quit. I suffered more intense and immediate symptoms so I decided it wasn't worth it. I still experience general tiredness but have improved that with B12 supplements. I have been managing my condition fairly well for the last few months but now I am experiencing considerable weakness. I have a physical job and find myself sore and weak constantly. I'm not sure what to do to regain my strength. I try to get a healthy amount of protein, I take vitamins and probiotics. I haven't been able to get my strength back. Any ideas?

PS

here are the symptoms I have when I eat gluten:

vomiting, muscle and joint pain, brain fog, chills, flu symptoms, non-localized pain (mostly my left side) with arm twitching, sore jaw (painful chewing), trouble speaking clearly, and a scary "feeling like I'm dying" sensation (probably all in my head)

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RiceGuy Collaborator
RiceGuy
Posted

What kind of vitamin B12 are you taking? What vitamins are you taking, and what are the dosages?

How are your fingernails? The condition of the nails often helps to identify possible nutritional deficiencies. The skin around the nails can also be a good indicator.

Do your eyes adjust to different lighting easily, or does it take more time than for most people you know?

This might seem like a strange question, but have you noticed any change in the frequency of yawning?

solarpower Rookie
solarpower
Posted
  • Author

Riceguy- Thanks for the reply.

The B12 I'm taking is a methylcobalamin @ 1000mcg, I usually take one 3 times a day. The vitamin I currently use is by a company called Nature's Way, The product is Alive! Once Daily Men's Ultra Potency. As far as my fingernails go they seem pretty healthy although they don't seem to grow as fast as I remember. I can't say much about my skin since I work with my hands and they tend to get covered in various things (soldering flux, salt water, several types of cleaners). My eyes do take a little bit to adjust for light and dark extremes but I believe its normal. Since I experience weakness and tiredness I do yawn throughout the day. Although the tiredness has dropped off quite a bit since I started taking the B12. Being a guy I tend to ignore my body, so its difficult to say with any certainty exactly what has changed with the exception of the extreme symptoms i.e. the weakness, fatigue and soreness.

GF Lover Rising Star
GF Lover
Posted

This might seem like a strange question, but have you noticed any change in the frequency of yawning?

I'm curious about the yawning, I yawn constantly, like I need a deep breath but can't get it.

I hope I'm not hijacking this thread.

kittty Contributor
kittty
Posted

I had a sore jaw for years too. My dentist said it was TMJ, and took my wisdom teeth out to try and fix it. It didn't stop the pain or stiffness though. Very probably a gluten reaction. Like you I've had lots of different symptoms, and every now and then someone will mention something in this forum and it'll be another "AHA!" moment where I can link another issue from my past back to gluten.

How long have you been gluten free? Maybe you haven't reached your point of full healing yet.

RiceGuy Collaborator
RiceGuy
Posted

Riceguy- Thanks for the reply.

The B12 I'm taking is a methylcobalamin @ 1000mcg, I usually take one 3 times a day. The vitamin I currently use is by a company called Nature's Way, The product is Alive! Once Daily Men's Ultra Potency. As far as my fingernails go they seem pretty healthy although they don't seem to grow as fast as I remember. I can't say much about my skin since I work with my hands and they tend to get covered in various things (soldering flux, salt water, several types of cleaners). My eyes do take a little bit to adjust for light and dark extremes but I believe its normal. Since I experience weakness and tiredness I do yawn throughout the day. Although the tiredness has dropped off quite a bit since I started taking the B12. Being a guy I tend to ignore my body, so its difficult to say with any certainty exactly what has changed with the exception of the extreme symptoms i.e. the weakness, fatigue and soreness.

Well, according to the company's website, the Nature's Way Alive! multi has wheat grass listed twice. Although I've read that the grass itself is gluten-free, I'd say contamination is practically guaranteed. The label doesn't claim it's gluten-free either. Anyway, the amount of magnesium is quite small, so I'd recommend a separate magnesium supplement. Some of the symptoms you mention could be due to magnesium deficiency. Magnesium is vital for energy production.

I've had good experience with the multi from NOW Foods called ADAM. It comes in both capsules and tablets, though I believe capsules are generally easier to digest.

If you haven't loaded up on B12 to overcome deficiency, you may still need a lot for awhile. So you might find it helpful to get the 5mg methylcobalamin, and take that for a month or two and see how it goes. I know it helped me quite a bit, and I did eventually switch to the 1mg. I've also found it helpful to take one 30-60 minutes before bedtime, for a deeper, more restful sleep.

As for protein, perhaps the types of protein you are getting can be better optimized, as well as the time you eat them. For instance, animal protein (meat, dairy, eggs) is generally more difficult to digest, and can therefor slow you down. A plant-based protein powder might help you. If you put the powder (along with any other ingredients you want) into a thermos, you could then take it with you, and all you'd need to do is add water. This way, it won't spoil if it doesn't stay cold, unlike making up the drink beforehand. Protein bars might also help, as might plain nuts and seeds. If you eat sandwiches, a nut/seed butter would help boost the protein value. Nut/seed butters also make a good spread for celery and other veggies, which could be eaten as snacks. Smaller meals with snacks in between may help reduce the digestive load while still providing the nutrition you need to keep energized throughout the day.

RiceGuy Collaborator
RiceGuy
Posted

I'm curious about the yawning, I yawn constantly, like I need a deep breath but can't get it.

I hope I'm not hijacking this thread.

I mentioned it because when my health was at its lowest point (which was after going gluten-free), I never yawned, even though I was always exhausted.

I had a sore jaw for years too. My dentist said it was TMJ, and took my wisdom teeth out to try and fix it. It didn't stop the pain or stiffness though. Very probably a gluten reaction. Like you I've had lots of different symptoms, and every now and then someone will mention something in this forum and it'll be another "AHA!" moment where I can link another issue from my past back to gluten.

How long have you been gluten free? Maybe you haven't reached your point of full healing yet.

Agreed. And BTW, I also had a lot of pain from TMJ, which is now gone thanks to Glucosamine HCL. The one I take also has MSM in it, though I don't know how much that may have helped.

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solarpower Rookie
solarpower
Posted
  • Author

Thanks for the info. It is much appreciated. I have only been gluten free for 6-7 months so maybe I still have some recovering to do. Thanks for the heads up on the vitamins Riceguy, I hadn't even considered my multi as a source of possible contamination. I will also try your other suggestions although snacking probably wont work for me with my on the go job. I've lost over 30 pounds since going gluten free and really need to gain some more muscle. It's been extremely frustrating trying to live life lately and only being able to barely make it through a work day just to crash at home for the evening. It makes for a non existent social life. I'll try upping the B12 and pick up a better multi.

solarpower Rookie
solarpower
Posted
  • Author

UPDATE

I skipped taking the Alive mutli this morning and did not experience the usual intense nausea I normally have every morning. I'm almost certain this must have been the reason! Took 5mg of B12 as well and already notice a difference so far just this half a day. Now to just find a good multivitamin.

RiceGuy Collaborator
RiceGuy
Posted

So glad that you've gotten a positive response already. The best Men's multi I've found is the one I mentioned. You can check the details for it on the manufacturer's website: Open Original Shared Link

They also make similar products in tablet and softgel form, also under the same name, ADAM.

solarpower Rookie
solarpower
Posted
  • Author

Started taking the vitamins you recommended Riceguy. I'm anxious for this weakness/fatigue to go as it obviously interferes with work and life in general. I'm still in the process of eliminating hidden gluten sources in my diet. Just found out the sour cream I use has gluten! I imagine my symptoms will start improving once all traces are gone. Anyone know of a source of gluten free recipes, such as a cookbook?

RiceGuy Collaborator
RiceGuy
Posted

There's quite a number of gluten-free recipes on this site. Here's a link directly to the recipe section: https://www.celiac.com/categories/Gluten%252dFree-Recipes/

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    • trents
      Outgrow celiac?

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      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked pointed out, absence of symptoms is not always a reliable indicator that no damage is being done to the body. I was one of those "silent" celiacs with no symptoms, or at least very minor symptoms, whose body was being slowly damaged for many years before the damage became pronounced enough to warrant investigation, leading to a diagnosis. By that time I had suffered significant bone demineralization and now I suffer with back and neck problems. Please, if you choose to continue consuming gluten, which I do not recommend, at least get tested regularly so that you won't get caught in the silent celiac trap down the road like I did. You really do not outgrow celiac disease. It is baked into the genes. Once the genes get triggered, as far as we know, they are turned on for good. Social rejection is something most celiacs struggle with. Being compliant with the gluten free diet places restrictions on what we can eat and where we can eat. Our friends usually try to work with us at first but then it gets to be a drag and we begin to get left out. We often lose some friends in the process but we also find out who really are our true friends. I think the hardest hits come at those times when friends spontaneously say, "Hey, let's go get some burgers and fries" and you know you can't safely do that. One way to cope in these situations is to have some ready made gluten-free meals packed in the fridge that you can take with you on the spot and still join them but eat safely. Most "real" friends will get used to this and so will you. Perhaps this little video will be helpful to you.  
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