Jump to content
  • 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

What Am I Doing Wrong?


Fire Fairy

Recommended Posts

Fire Fairy Enthusiast

The thing that I have complained to my Dr's about for years has been my migraines. In November my current Dr determined I had Celiac disease. At the time I was having as many as 16 days of migraine per month. Since then I had 4 in Nov, 4 in Dec, 4 in Jan, 3 in Feb, 2 in March, 1 in April, and so far 6 in May! In March and April I gave up Diet Coke for Lent. Since Easter I've been drinking 1 20oz Diet Coke most days.

I also have D issues. I find these harder to map because I never used to pay attention to it. On a positive note I realized I have had the gut pain many folks on here talk about, I realized it when I hadn't had the pain in a long time. (I hope that makes some sense)

I'm concerned that I might have another intolerance (besides gluten and lactose). I start everyday with fresh brewed coffee and Almond milk. Most days I have Amy's Chili with corn chips for brunch, A Vegan Rice Slice and French's Mustard sandwich for Lunch, snacks of a Kind bar, a Larabar, and a fruit (Usually Banana or Orange), and Dinner is usually one of the following: dried beans and corn chips, 3 boiled eggs and 2 slices Udi's bread, or a Sunshine (veggie) Burger and 2 slices Udi's bread.

Any ideas? Could it just be the Diet Coke? Could it be corn (please no)? Maybe the rice found in my Kind Bars, bread, and burgers? What else should I be concerned about?


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



Celiac.com Sponsor (A8-M):



sa1937 Community Regular

I suspect that since you had fewer migraines when giving up Diet Coke, that it might be a major issue. That doesn't mean you may not have issues with other types of foods, but the Diet Coke definitely sends up red flags for me.

Maybe you should give up the processed foods for awhile and go to a more whole foods diet to see if the other issues resolve. Some of us have had issues with Amy's products. You might want to keep a food diary to see if you can pinpoint it further.

Lima Bean Newbie

Have you looked up migraine triggers? I think caffiene might be one in some people.

kareng Grand Master

I used to get them at the end of my period. It was due to hormone levels.

Does your doctor have anything to say about them? You might want to see a neurologist.

jerseyangel Proficient

Both aspartame and Splenda give me migraines. Going gluten-free had no effect on them--I finally made the connection about 2 years after going gluten-free, and since then have had no migraines. They did taper off, not go away "just like that".

Fire Fairy Enthusiast

I have done a lot of research on migraines. Oddly enough Celiac Disease never showed up in any of my research. I've been suffering from them all my life, I think the first Dr gave it the name Migraine in 1995. Onions seemed to be a big trigger until I gave up gluten now I can eat all the onion I want. :) Another trigger was my cycle and yet another was barometric pressure. I've quite happily not been a barometric pressure gauge since November. Before my co-workers knew it was going to rain just by taking a look at me. Fairly certain it's not caffeine.

I started adding Splenda to my coffee a month or so ago so that could be part of the problem. I'll leave it and the Diet Coke off and go from there. I really hope it's not Amy's because I'm not much of a cook and having an easy go to meal is very comforting to me. If it is I'll just have to cow-girl up. Crossing my fingers it's the sweeteners!

PS-Thanks everyone for your in-put!

jerseyangel Proficient

I started adding Splenda to my coffee a month or so ago so that could be part of the problem.

Could be. I only used it in my tea--didn't cook or bake with it so I wasn't really using all that much. I hope you get to the bottom of this quickly, as those headaches are no fun at all.


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



Celiac.com Sponsor (A8-M):



Whatnext? Rookie

It most definitely could be the diet coke. I have been addicted to diet coke for years. I get headaches any time I have tried to quit. I got headaches when switching from caffeinated diet coke to caffeine free diet coke. So you would think it was the caffeine. But I also get headaches when I stop drinking caffeine free diet coke. Which leads me to believe its the aspartame.

I think it helps to slowly wean yourself off diet coke. gradually down to 1 a day, then 1/2 a day, then none. It helped me to increase my intake of fruits. I found the more fruit I ate the less craving I had for diet coke.

I had been diet coke free for several months when I found out I have celiac. And feeling sorry for myself and everything I have to give up, I started drinking it again. diet coke is bad news on so many levels, caffeine, aspartame. The fact that when you drink it you tend to eat more. and you tend to eat more junk food. Which leads to weight gain etc.

So now I need to quit it all over again. but I find myself drinking one in the morning when I start to feel the headache coming on, almost like medicine. It is definitely an addiction.

I think your migraines may go away once you go through the withdrawal processes. But it may take a couple of weeks if you've gone cold turkey.

Skylark Collaborator

I hate to tell you this but some people have had CC issues with Amy's. The pizza is the worst but I don't trust that brand any more.

Fire Fairy Enthusiast

Starting to think it could be both the Amy's and the Diet Coke. :( Looks like I'm going to need to start actually cooking.

sa1937 Community Regular

Starting to think it could be both the Amy's and the Diet Coke. :( Looks like I'm going to need to start actually cooking.

Hopefully by giving them up you'll start to feel better soon. I've yet to find processed foods to be very satisfying nor did I even before diagnosis. I tried exactly one Amy's pizza (blech). And I simply dislike the taste of artificial sweetners.

Cooking isn't so bad...you can keep it simple. Meats or fish, potatoes, rice or pasta, veggies, etc. I have a pot of chili in my slow cooker right now, most of which will be put in single serving sizes in the freezer for those times I absolutely do not want to cook.

sandsurfgirl Collaborator

I am very against artificial sweeteners. In my opinion they are poison and toxic. I gave them up years ago and saw an improvement in my health even before I was diagnosed celiac. I would get rid of that stuff yesterday. Soda, coffee and chocolate are migraine triggers.

Your diet sounds pretty heavy to me and lots of grains. Are you eating enough vegetables and fruits?

Also, I'm not familiar with those brands of foods, but do they contain a lot of soy? I didn't read the other posts so I'm not sure if you are vegetarian. Soy could be the problem.

Are you well hydrated? Do you need more water? Electrolytes?

I hope you find answers.

sandsurfgirl Collaborator

I wanted to add, that you might try eliminating a bunch of things and if they disappear adding one thing back every few days.

I tend to eat pretty simple for breakfast, lunch and snacks and then I actually cook meals for dinner. A lot of times my lunch is some cut up veggies and fruit and some sort of meat, maybe gluten free crackers. I try not to go crazy on starchy carbs so I don't do sandwiches all that much.

Marilyn R Community Regular

Starting to think it could be both the Amy's and the Diet Coke. :( Looks like I'm going to need to start actually cooking.

I had a problem with the almond milk on my elimination diet...but that could just be me. I think it was that Carageean. I may have misspelled that.

Cooking isn't that bad. It can actually be fun, relaxing and rewarding. That sounds like a commercial but it's true.

I hate doing laundry, but nobody does it for me. Some of the things I cook are easier than the effort it takes to do laundry. And while I need to have clean clothes, it's even more important to eat things that aren't going to mess me up. B)

Lori2 Contributor

I have a friend who discovered after suffering for two years that her severe arthritis was caused by the aspartame in diet sodas. Nasty stuff whether you're celiac or not.

sandiz Apprentice

The thing that I have complained to my Dr's about for years has been my migraines. In November my current Dr determined I had Celiac disease. At the time I was having as many as 16 days of migraine per month. Since then I had 4 in Nov, 4 in Dec, 4 in Jan, 3 in Feb, 2 in March, 1 in April, and so far 6 in May! In March and April I gave up Diet Coke for Lent. Since Easter I've been drinking 1 20oz Diet Coke most days.

I also have D issues. I find these harder to map because I never used to pay attention to it. On a positive note I realized I have had the gut pain many folks on here talk about, I realized it when I hadn't had the pain in a long time. (I hope that makes some sense)

I'm concerned that I might have another intolerance (besides gluten and lactose). I start everyday with fresh brewed coffee and Almond milk. Most days I have Amy's Chili with corn chips for brunch, A Vegan Rice Slice and French's Mustard sandwich for Lunch, snacks of a Kind bar, a Larabar, and a fruit (Usually Banana or Orange), and Dinner is usually one of the following: dried beans and corn chips, 3 boiled eggs and 2 slices Udi's bread, or a Sunshine (veggie) Burger and 2 slices Udi's bread.

Any ideas? Could it just be the Diet Coke? Could it be corn (please no)? Maybe the rice found in my Kind Bars, bread, and burgers? What else should I be concerned about?

You might want to check the "veggie" burgers, I have noticed that a lot of them contain wheat. Just because it is vegetarian doesn't me it is save for gluten-free.

cyberprof Enthusiast

Sorry you're having troubles.

I react to diet coke. A couple times that I felt "glutened" I blamed it on a restaurant or the server having gluten on their hands and getting it into the cup. Just recently I realized that the diet coke itself was the problem and have sworn off having it. The year before I was diagnosed I had 1-2 diet cokes a day and felt like crap. Now I don't know why this is but I think it's better that any celiac who has symptoms should not eat aspartame.

Regarding the Amy's and the Udi's, I (along with the Gluten Free Girl Open Original Shared Link ) think that I am sensitive to xanthum gum, which is in breads and other baked goods. I am ok if I eat one piece of Udi's or Rudi's bread but two gives me symptoms. It could also be that the 20ppm catches up with me if I eat too much gluten-free bread products.

And finally, I found that I react to safflower oil, which is in some tortilla chips. I think that perhaps the safflower plants are processed or stored in contact with gluten.

So, just some things to think about. My suggestion is to go to plain rice, plain potatoes, plain veggies and no processed foods and then add back slowly to see exactly what it is that bothers you. Good luck!

GlutenFreeManna Rising Star

So, just some things to think about. My suggestion is to go to plain rice, plain potatoes, plain veggies and no processed foods and then add back slowly to see exactly what it is that bothers you. Good luck!

This is excellent advice. Your current diet is very high in processed foods. gluten-free processed foods could have low levels of gluten which add up to a big effect when you eat all of that stuff all the time. They could also have some other ingredients which are bothering you and it could take forever to figure out if you have another intolerance eating the way you are now. Best to drop down to the basics for a few weeks (including cutting out the diet coke), then if you don't have any migraines, add things in one new food per week until you figure out what is bothering you.

NateJ Contributor

I would start with the diet coke. Really any soda or carbonated beverage. I get the migranes too. And can always trace it back to days I had soda.

I stopped drinking Coke after a friend came over and used it on my car's battery terminals. He poured it over the corrosion and it ate it away in a matter of seconds. All i could think was, that stuff does that to your stomach too.

Its a nasty drink that no only does things to your stomach/digestive parts, but can reek havoc on your kidneys and bladder too. I know it can be impossible to give up, i was addicted full on to Mt. Dew for years. But I eventually became so sick I had to stop. I had terrible withdrawls for a long time. But in the end it was worth it. I feel better now than i ever did with the short bursts of energy i would get from the liquid crack.

Fire Fairy Enthusiast

You might want to check the "veggie" burgers, I have noticed that a lot of them contain wheat. Just because it is vegetarian doesn't me it is save for gluten-free.

Very true but in this case they are gluten free. I eat Sunshine Burgers they are great.

Fire Fairy Enthusiast

My suggestion is to go to plain rice, plain potatoes, plain veggies and no processed foods and then add back slowly to see exactly what it is that bothers you. Good luck!

I'm going to give this a try more or less. I'm going to keep my Larabars and Kind Bars for work (at least for the moment). It could easily be that since I eat a lot I'm getting too much at 20ppm. :( I still hope it's just the Diet Coke though as it is very easy to do with out.

Fire Fairy Enthusiast

I would start with the diet coke. Really any soda or carbonated beverage. I get the migranes too. And can always trace it back to days I had soda.

I stopped drinking Coke after a friend came over and used it on my car's battery terminals. He poured it over the corrosion and it ate it away in a matter of seconds. All i could think was, that stuff does that to your stomach too.

Its a nasty drink that no only does things to your stomach/digestive parts, but can reek havoc on your kidneys and bladder too. I know it can be impossible to give up, i was addicted full on to Mt. Dew for years. But I eventually became so sick I had to stop. I had terrible withdrawls for a long time. But in the end it was worth it. I feel better now than i ever did with the short bursts of energy i would get from the liquid crack.

Thank you for sharing Nate I was very addicted to Diet Coke years ago but recently I've taken medication (Topamax) that made it undrinkable. Unfortunately after I stopped the meds I started drinking a coke or two a day again.

Lori2 Contributor

I'm going to give this a try more or less. I'm going to keep my Larabars and Kind Bars for work (at least for the moment). It could easily be that since I eat a lot I'm getting too much at 20ppm. :( I still hope it's just the Diet Coke though as it is very easy to do with out.

Be aware that the bars could be a problem. I absolutely love the Cinnamon Roll Lara Bars--bought three cartons--only to find out that they give me diarrhea.

Fire Fairy Enthusiast

I am very against artificial sweeteners. In my opinion they are poison and toxic. I gave them up years ago and saw an improvement in my health even before I was diagnosed celiac. I would get rid of that stuff yesterday. Soda, coffee and chocolate are migraine triggers.

Your diet sounds pretty heavy to me and lots of grains. Are you eating enough vegetables and fruits?

Also, I'm not familiar with those brands of foods, but do they contain a lot of soy? I didn't read the other posts so I'm not sure if you are vegetarian. Soy could be the problem.

Are you well hydrated? Do you need more water? Electrolytes?

I hope you find answers.

Eliminated the sweeteners Sunday. You're quite right about them.

I think I'm eating enough vegitables and fruit. Some days I eat more fruit than others. On the vegetable front when I say I eat a bowl of beans I have big bowls! I'd guess they hold about three servings of beans. Corn chips count as veggies right? :rolleyes:

I am in the process of becoming a vegetarian. I don't think it's soy. The bread, burgers, and chili I eat are all soy free. However I left out Mi-del ginger snaps which I eat fairly often and they have soy flour.

It's not hydration, years of migraines have taught me to always stay hydrated. I drink a lot of water.

Thank you for your thoughts I'm sure I need to get more fruit and veggies in. I'm going to try to go to basics for a little bit and see if it helps. While I'm doing that I'll be sure to add in more veggies and fruit. On my way to make a strawberry, banana, cran-grape smoothie now.

Fire Fairy Enthusiast

Be aware that the bars could be a problem. I absolutely love the Cinnamon Roll Lara Bars--bought three cartons--only to find out that they give me diarrhea.

That would be bad they are so handy for work especially since I work with a bunch of gluten eaters. I can just keep my bars in my purse wash my hands pull out a bar and it never has to touch anything in the breakroom. I think for the first few days I'll chance it. I'm off work Thursday and Friday so I won't be eating them those two days, if I'm suddenly feeling better on Saturday I'll definitely remove those from my diet.

Thank you.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,962
    • Most Online (within 30 mins)
      7,748

    AlissaW
    Newest Member
    AlissaW
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Scott Adams
      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.