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kristenloeh

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kristenloeh Community Regular
kristenloeh
Posted

I was just diagnosed with Celiac about two months ago. I'm very committed to being gluten free and have been eating gluten free since my diagnoses, but I keep getting glutened from cross contamination. I'm still having horrible migraines, problems with my lips and canker sores in my mouth and massive stomach troubles, but I guess that it's just going to take a long time to heal since I have been having these problems for well over 10 years, we just thought I had IBS.

Friday my mom bought some Tostito's Scoops and they claim to be safe and that they clean their equipment each time, but there must have been just a trace of cross contamination and I got sicker than hell. Migraine that wouldn't go away for 2 days, nausea, cramping, loose bowels (sorry TMI), running to the bathroom constantly the last 2 days, and canker sores on my lips and in my mouth. All from a couple of chips.

Although I am very committed to being gluten free, I'm still finding it difficult to kind of come to terms with it in a way. I guess it's just hard to be surrounded by my whole family who can just eat normally and have all the things that I miss so much and don't have to take so many precautions like I do to make sure that nothing is contaminated. I kind of feel like the girl in the bubble, lol. It doesn't help that most of my friends have pretty much bailed on my since I've been sick and dealing with being diagnosed and trying to get better. I've been in and out of the hospital 4 or 5 times this last month due to migraines & no one has even picked up the phone to see how I've been, so I'm hoping I can meet some people here that are understanding.

Anyway, enough of my ramblings. :)

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gluten free overseas Apprentice
gluten free overseas
Posted

Hang in there! I've been gluten free for a year and 3 months. It feels normal now. But the first year is really hard.

You might be intolerant to more than just gluten. Do you have problems with corn as well?

I am now off of gluten, dairy (although, I can have a little bit of it--a gluten free piece of pizza once a month), eggs, nightshades (this one is very hard for me), soy, and now... cane sugar!! I'm using honey and agave instead of cane sugar. Massive difference in my energy levels after going off cane sugar--and if you think of it, cane sugar is like a grass/grain type of plant. From what you are saying, I wonder if you are going to end up heading down that path and finding that more foods upset your stomach (not just gluten).

It took a long time and lots of elimination diets--but I wake up in the morning feeling well and happy now. I haven't woken up in the morning feeling well in my entire life until now. It's worth it.

The most annoying thing is "why does food have to be so complicated?" I have found foods that I love to eat (it was like a part time job re-learning to cook and bake), so for me, I'm not heart broken about the food. I'm just frustrated that food has to be so complicated. Every restaurant, every holiday, every family gathering, every time I take communion at church... it's like... I can never get away from it!

Stay strong. Love the foods that love you back!! :)

1desperateladysaved Proficient
1desperateladysaved
Posted

Greetings,

If you had a chance to read many of these posts, I am sure you are finding many of us are in the same boat. I hope you will be able to learn what is right for your body and that you will get well soon.

I can relate to the why is food so complicated question. I am living in a family eating gluten also. I think it will get less complicated as we get adjusted.

My friends think that I am obsessed with health study and make my life an idol. I hope to keep my friends until I can get things to be easier. I have to do what I have to do. Living in constant fatigue is simply not an option. Some are already seeing changes in me that they like. For my part when I am not feeling withdrawl symptoms, or dealing with cross contamination I feel more out-going than ever.

Diana

kristenloeh Community Regular
kristenloeh
Posted
  • Author

I've been lactose intolerant longer than I can remember, haha. I haven't noticed any other problems with anything else, but I will keep an eye out. What are "nightshades"? I've seen that posted on the board a few times now but haven't heard of it until now.

Thank goodness I like to cook and experiment. I think the thing that is getting me the most is the fact that I have no meals that are just fast and easy anymore. I have to cook EVERYTHING now, which, with my lack of energy and fatigue is difficult.

cavernio Enthusiast
cavernio
Posted

Tostitos don't agree with me, like other corn chips. I'm off refined corn products for now.

frieze Community Regular
frieze
Posted

I was just diagnosed with Celiac about two months ago. I'm very committed to being gluten free and have been eating gluten free since my diagnoses, but I keep getting glutened from cross contamination. I'm still having horrible migraines, problems with my lips and canker sores in my mouth and massive stomach troubles, but I guess that it's just going to take a long time to heal since I have been having these problems for well over 10 years, we just thought I had IBS.

Friday my mom bought some Tostito's Scoops and they claim to be safe and that they clean their equipment each time, but there must have been just a trace of cross contamination and I got sicker than hell. Migraine that wouldn't go away for 2 days, nausea, cramping, loose bowels (sorry TMI), running to the bathroom constantly the last 2 days, and canker sores on my lips and in my mouth. All from a couple of chips.

Although I am very committed to being gluten free, I'm still finding it difficult to kind of come to terms with it in a way. I guess it's just hard to be surrounded by my whole family who can just eat normally and have all the things that I miss so much and don't have to take so many precautions like I do to make sure that nothing is contaminated. I kind of feel like the girl in the bubble, lol. It doesn't help that most of my friends have pretty much bailed on my since I've been sick and dealing with being diagnosed and trying to get better. I've been in and out of the hospital 4 or 5 times this last month due to migraines & no one has even picked up the phone to see how I've been, so I'm hoping I can meet some people here that are understanding.

Anyway, enough of my ramblings. :)

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kristenloeh Community Regular
kristenloeh
Posted
  • Author

Yeah, I am looking for an allergist so I can see what else can be messing with my stomach/allergies/migraines as well. :)

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Kirstie Apprentice
Kirstie
Posted

Yeah, I am looking for an allergist so I can see what else can be messing with my stomach/allergies/migraines as well. :)

Just out of interest, how is everyone discovering what other foods they are intolerant to?

I've been of gluten but have had no help with doctors at all! I'm concerned I may be intolerant to other foods but feel so overwhelmed and don't know where to begin! :(

kristenloeh Community Regular
kristenloeh
Posted
  • Author

Same here Kirstie, that's one of the reasons why I'm starting out at the allergist to see if there are any allergies setting me off and then I will go from there and start doing some elimination diets. I had a complete meltdown last night and today about everything going on with how crappy I've been feeling. I've been sick my whole life with one thing or another and it's just finally getting to me. I had a breakdown making meatloaf because I forgot an ingredient. >.<

bartfull Rising Star
bartfull
Posted

I have no insurance and no official dx, but I did an elimination diet and that's how I found out I am intoleratnt to corn and soy. The hardest part is getting to where you're feeling pretty good, then adding a food that turns out to be bad for you. It's like Russian roulette - "Today I'll try _____" and wondering if there IS a bullet in that chamber. Then you have to wait a week or three before the symptoms clear up and you can shoot yourself again!

dani nero Community Regular
dani nero
Posted

Just out of interest, how is everyone discovering what other foods they are intolerant to?

I've been of gluten but have had no help with doctors at all! I'm concerned I may be intolerant to other foods but feel so overwhelmed and don't know where to begin! :(

elimination diet + food/ symptom diary :-)

kristenloeh Community Regular
kristenloeh
Posted
  • Author

As soon as I get my results from the allergist I'll be trying some elimination diets to see if cutting out certain things help more with my migraines and stomach issues.

Annie82 Newbie
Annie82
Posted

It's a relief to hear that I'm not the only one. I have been on the diet since the end of Feb. and still feeling terrible. I am learning that I can't trust labels as much as I thought I could. I had been eating Jif Natural peanut butter and finally emailed the company only to find out it's not "safe" for celiacs because of cross contamination. What makes the whole thing so hard is the mass amounts of "gluten free" labeling and websites making sweeping statements like "all nut butters" are "safe" or "the good news is......celiacs can have _____________" (insert food or drink that could be cross contaminated. And this news from the FDA in March tells me I can't have whiskey. Sooo sad. I can't imagine how hard it was even a year ago when we knew even less about this disease. I'm afraid I will be left eating only fruits and vegetables, which I like, but I am SO hungry!! Really wish more companies would get the gluten-free certification.

kareng Grand Master
kareng
Posted

It's a relief to hear that I'm not the only one. I have been on the diet since the end of Feb. and still feeling terrible. I am learning that I can't trust labels as much as I thought I could. I had been eating Jif Natural peanut butter and finally emailed the company only to find out it's not "safe" for celiacs because of cross contamination. What makes the whole thing so hard is the mass amounts of "gluten free" labeling and websites making sweeping statements like "all nut butters" are "safe" or "the good news is......celiacs can have _____________" (insert food or drink that could be cross contaminated. And this news from the FDA in March tells me I can't have whiskey. Sooo sad. I can't imagine how hard it was even a year ago when we knew even less about this disease. I'm afraid I will be left eating only fruits and vegetables, which I like, but I am SO hungry!! Really wish more companies would get the gluten-free certification.

Perhaps you are confusing the CYA statements of "we don't spend the extra money to test so we won't say it gluten-free?"

quincy Contributor
quincy
Posted

As soon as I get my results from the allergist I'll be trying some elimination diets to see if cutting out certain things help more with my migraines and stomach issues.

sorry to hear you are in distress, but its a good thing you finally found out. Did you have a biopsy? if so, how bad was the villous atrophy?

At 3 months, I am sorry to say, your healing is not even in the early stages yet. Your body is just reeling now from the gluten withdrawal which you will get from eating MOST

processed foods, even stuff like tostitos scoops which in a year you will probably be able to tolerate without any problems. I got D from corn and milk in the first year, so just keep that in mind.

  • 2 months later...
kristenloeh Community Regular
kristenloeh
Posted
  • Author

sorry to hear you are in distress, but its a good thing you finally found out. Did you have a biopsy? if so, how bad was the villous atrophy?

At 3 months, I am sorry to say, your healing is not even in the early stages yet. Your body is just reeling now from the gluten withdrawal which you will get from eating MOST

processed foods, even stuff like tostitos scoops which in a year you will probably be able to tolerate without any problems. I got D from corn and milk in the first year, so just keep that in mind.

Yes, I had the endoscopy and biopsies done. The damage was quite severe. I'm healing a lot better than I thought I would. Went to the allergist and have a nutritionist along with a neurologist and slowly getting everything on track. I have to say, I have NEVER felt this well in my whole life. Unfortunately the gluten wasn't the only thing with my migraines. I've been officially with chronic migraines, so trying new abortive and preventative meds along with pain meds just in case so I don't have to go to the ER every other week. Just waiting for these next 6 or so months to pass so my body can chill out a bit more and not have to focus on all the inflammation and may get to lose weight soon. :)

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