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

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
      128,181
    • Most Online (within 30 mins)
      7,748

    ViRose
    Newest Member
    ViRose
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      Once you have removed the inflammatories, it is time to focus on the deficiencies.  A lot of them not specific to Celiac, but deficiency in them elicits symptoms associated with Celiac. According to research, celiac disease tends to be more prevalent in urban areas compared to rural areas.  Same is true with airborne viruses.  Because urban residents get less sunlight.  To top it off we use lotion and gear to block the little light there is.  This compremises the vitamin D blood level.  A virus attack further lowers vitamin D and the immune system loses control over the Celiac genes and they go into acute symptoms. 40% to 75% depending depending on country are vitamin D deficient. 50% do not eat the Adequit Intake for potassium (4700 mg a day) 90% do n ot eat the Adequit Intake for Choline. Iodine intake since 1970 had dropped 50%.  The western diet is typically excessive in omega 6 fatty acid compared to omega 3.  Above 14:1 by some estimates.  So they sell us expensive, processed oils to compensate.  Anyway after 10 years gluten free myself,  here is what has helped me in just the past few years; once I realized I was at a healing plateau and just GFD would not cut it, and reallized my deficiencies.  Most recently, I started a statin which I only took for two weeks before it started to cripple me.   Got a prescription for Nicotinic Acid to 2000 and am more flexible now Plus HDL went 29 to 44, eGFR from 55 to 79. I also learned if the pharmacist gets a prescription for Niacin that it is dealer's choice whether you get Nicotinic Acid or Niacinimide.  And it comes out of a regular vitamin manufacturer.   "likely deficiencies and what I take to boost my intake (I get anorexic at the drop of a hat so I take them to keep me stable):  the ones that helped me the most noticibly Was increasing vitamin D blood level to 80 ng/ml and Iodine to 500 mcg once or twice a day, Thiamine, Choline, and Iodine. 10,000 IU vitamin D 500 mg Thiamine or more Choline Iodine – 600 to 1200 mcg of Liquid Iodine Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply.  500 mg Nicotinic Acid - increase capillary blood flow, lower cholesterol. I recently started 2000 mg a day instead of a statin which I cannot tolerate. I the first month my HDL went from 29 to 44. eGFR (kidney function) jumped from 55 ti 75. It also has make my whole body less stiff. The ichy, flushing with the first few doses goes away. The non flush forms of vitamin B3 do not work. It is the relaxing of the capillaries and tendons. 500 mg Pantothenic Acid vitamin B5 Omega-3 and Omega-6 Fatty Acids in Vegetables  Eating more of the vegetables low in omega six and high omega 3 can reduce inflammation Whole Milk Vanilla yogurt to which I add 100 grams of raspberrys, black berries and blueberries has lots of probiotics and makes my tummy and body happy. Red Bull has sugar (not high fructose corn syrup) and the vitamins (B2,3,5,6 need to metabolize to ATP energy and Taurine as an antioxident). It is a good source of energy for me because my genetic hyperlipidemia does not process complex carbs well.        
    • trents
      Gluten-like cross reactions to other foods are from the proteins that make them up. Dextrose is the sugar component found in corn.
    • Ryangf
      I just found out a few days ago that some salt like table salt contains dextrose that’s derived from corn. I’ve been thinking about getting rid of using table salt and just using my own kosher or Himalayan salt, but tbh I’m reluctant to do it. I’ve cut out a lot of things and I don’t really want to cut out anything else that I’m not sure will effect me…in a super small amount that it might be added to salts to stabilize the iodine. I don’t want to be further alienated when I have to go to a restaurant with my friends. Also most of the items at my house that have salt in it canned food etc. are some of the few quick things I can eat- because I’m not the one paying for the food in my household and i can only ask for so much. I’m not in a place financially where I can get a lot of my specialized items- although my family tries their best to get items I Can actually stand. I get I can bring a my own salt with me at a restaurant and ask for no seasoning but it feels like a lot to me- cause I already check for cross contamination and ask if the food has like a high volume of corn in it like cornstarch etc. I’ve also heard most dextrose is not derived from the Zein (corn gluten) portion of it- so it might be safe- but idk if that’s true. I just wanna know if anyone actually responded to it negatively.
    • Scott Adams
      For my first couple of years after discovering my celiac disease I also had to avoid cow's milk/casein and eggs, as well as other things, but could tolerate duck eggs and sheep and goat's milk products. I'm not sure if you've tried those, but it could be worth testing them out.
    • knitty kitty
      Hello, @Kwinkle, How are you doing?   Have you tried adding a Magnesium supplement?   The B Complex vitamins need magnesium to work properly, especially thiamine vitamin B 1.   Magnesium deficiency symptoms and Thiamine deficiency symptoms both include gas and bloating.  Thiamine deficiency symptoms also include loss of appetite and fatigue.   My gas and bloating resolved rather quickly when I took Benfotiamine (a form of thiamine shown to promote intestinal healing) and Magnesium Glycinate in addition to my B 50 Complex (all twice a day plus the following...).   I found Magnesium L-Threonate or Magnesium Taurate are better when taken with a form of thiamine called TTFD (Tetrahydrofurfuryl dusulfide) because all of these cross the blood brain barrier easily, which corrects the loss of appetite, fatigue and anxiety.    Like @Celiacandme said, keeping a food/mood/poo'd journal is a big help in finding problematic foods, and for making sure your diet is not carbohydrate heavy.  If you're eating a lot if processed gluten free facsimile foods, be aware they do not have vitamins and minerals added to them like their gluten containing counterparts.  For every 1000 kcal of carbohydrates, we need an extra 500 mg of thiamine to turn them into energy and not store them as fat.   Let us know how you're doing!
×
×
  • Create New...