jewi0008

Having a food log will help a lot.

If it isn't clear which foods are causing a problem, the trick is to gradually eliminate one item at a time from your diet. This is harder if your diet contains lots of processed food. For example, soy and/or corn are in just about everything. Nonetheless, the idea would be to keep simplifying your diet until the problems stop. Then, gradually add one item back at a time and see which one was the last item added when the problem happened again.

When people post about additional intolerances, the most frequently mentioned items are soy, dairy, corn, grains, nuts, eggs. These would be a good place to start.

It has taken two years to determine my current list of additional intolerances. It is a very slow and tedious process.

I've decided NO SOY this week...starting today. I had to cut the tofu and the almond milk (there is soy lecithin in the almond milk) Anyways, this week here will be my diet:

1. Rice milk

2. coffee

3. Xlean turkey plain

4. plain grilled chix

5. apples

6. lettuce

7. quinoa

8. tea

THE END. How does that sound? We'll see what happens!

It has happened to me also. Recently I ate a meat product that had soy in it. It was a large roast, so it was ingested over a period of about 3 days. After a few "explosive" intestinal incidents, I got to thinking....do I have a soy problem also?? Enterolab did another test, and sure enough, I have a soy problem.

Use some vaseline in the rectal area after such an incident, and drink some Gatorade to hydrate yourself. Some Pepto Bismol may help also.

Funny you mention that about soy. I think Soy is my other problem. I cannot, for the life of me, get better. And what do I eat everyday for breakfast? Tofu. Oh no!!! I can't live without tofu, too...but I wonder if Tofu is prohibiting me from getting well, too? I have mouth problems...I wonder if the soy causes that or if it's the gluten or what?

This is gross, but I have to ask it:

After you get "glutened," does anyone else have problems with having D, but D that almost "burns" as it comes out of you?

Like an idiot, I ingested Gluten last night at a Halloween Party (Could not resist everything!!) I got home this morning and am sick to my stomach and had D that actually hurt when coming out. It's also very, very stinky and very, very dark in color...almost black.

Does this sound familiar to anyone?

I have a problem with corn but it is part of a bigger issue with a specific reaction. As of about 2 yrs ago, something in the right side of my neck swells up if I eat corn, soy, legumes, nuts, dairy, eggs, potatoes, chicken, cinnamon and most oils. Until several months ago, there was no apparent connection between any of these. Then, I stumbled over the fact that they all contain lectin and, if you believe the blood type diet, they are all on the avoid list for my blood type. Haven't completely decided about the diet but the web site has helped me identify things like cinnamon which cause only a slight reaction. Don't have a clue why this suddenly became a problem.

In general, some people do better avoiding all grains. Maybe you're one of them.

Do you also get a dry mouth at all? How can you find out your blood type?

Hi Ali,

I am glad you are finding out what is making you so sick. And I am glad you told me that caramel flavor/color has some milk stuff in it. I did not know that, but perhaps it makes sense somehow...

Keep it up - just don't give up until you feel better. I am still working on it, but have a lot more good days than bad days... Now my bad days are mostly when I KNOW I am eating something (NOT gluten, though!) that will make me sick... Dumb to do, but I am only human.... And there are just some goodies that I miss... However, my side stepping happens less and less frequently as I learn about and find alternatives, especially to satisfy my sweet tooth...

I have to go to work, so more later!

Thank you all for your advice. What will happen to me is either C or D. On top of it I usually suffer from EXTREME fatigue. But typically it only lasts a day. Saturdays are my days when I don't do strict dieting....and for some reason I always "mess up gluten and/or else-wise" on those days. I hate it, but because I eat so many different things on Saturdays (ie. soy, sugar, ect.) I can never pin what or why it is that on the following Wednesday or Thursday I'm miserable.

I get dry and irritated mouth...sides of my tongue and roof of my mouth. It only goes aways sometimes, but because I know I have delayed reactions I, for the life of me, cannot pin it on any food or day of the week it came from.

It's not fun to live this way, that's for sure.

And by the way...I gave up coke and dark-colored soda a long time ago because I reacted immediately to it....I would get like a lump in my throat and could barely swallow. I really try to stay away from anything caramel. I wonder what else relates to the coke and/or caramel that I really need to avoid?!

Hello! My name is frustrated...nice to meet u

Just kidding But seriously, I had NO idea until a few days ago that i could develop more intolerances. I have been sick for two months and it is getting worse. I am going to eliminate casein/dairy first. I think i have to limit sugar too! I am so hoping i can still tolerate soy as it is in everything! Oh! and tomatos are bothering me too!

What are your symptoms? HOw did you know? How did you know what to cut? Yeah...my name is FRUSTRATED!

I know how you feel. I cannot eat poultry, beef, pork, oils, nuts, seeds, dairy, salt, sugar (yeah this one sucks) no berries, no melons, and no grapes, no soy, and of course gluten

Boring as heck especially when I still fix the other foods except gluten for my family and they limit dairy. You do get use to it after awhile but Im still bitter about it kinda the only bonus its hard to have a weight problem when you eat this healthy

How did you discover that you cannot have all of that food? I cannot figure mine out!!! And I keep a very, very precise food log.

Are you taking any supplements? I was really deficient in B, A, D, E, iron and magnesium. I hope eventually my intestines will heal and I can stop them but in the meanwhile I can tell if I miss them. My cycle was horrible before I was dx'ed. So bad, in fact, I was considering hysterectomy. Since going gluten-free they are light and *almost* pain-free.

Just a thought. Good luck!

I was dx'ed in April, too!

What type of supplements do you take? I currently take a multivitamin, Folic acid and the B Complex. What else is a necessity do you think?

My reaction time is similar to yours, I have some small indictations depending on the amount of gluten fairly quickly but the real reaction takes about 3 to 5 days depending on how quick my system is moving. Gluten reactions are an intolerance, it can take up to 5 days for the antibody reaction to set in, that is not unusual. Everyone is different so reaction times can differ and they may even change timing and presentation after you have been gluten-free for a few years and are farther along in your healing. I hope I am wrong but you are probably going to feel pretty bad today and for the rest of the week. If stomach pain gets severe try some pepto bismal, if you can tolerate asprin, that helps a great deal for many of us. If at all possible do not medicate the D, let your system clear itself, hard to do if you have work or school but it will get rid of the effects quicker. If you are one of us that get C make sure you get lots of fluids and fiber from fruits and veggies hopefully that will help.

Thanks! I've just been a little achy today and my mouth hurts. Not too much, else, though. I wonder when it's coming. Nervous....THANKS

I couldn't resist. I ingested a ton of gluton, soy, dairy, sugar, ect this weekend while at a wedding. The day of the wedding I was completely symptom free. I could not believe it. I felt better than I have in a long time (and the night before is when I started eating "badly"). The day after the wedding I was still pretty good. Today I'm starting to feel it. This makes me wonder what is playing with my head and my symptoms. This also made me wonder about everyone else's reaction times.

What are all of your reaction times?

my tongue now seems to have recovered hooray! except in its place i have a full cold and sore throat. but i didnt have mouth ulcers or anything, and there was nothing noticeably wrong with my tongue it just felt bad.

you know what sucks tho? i took cold n flu tablets last night, then went to have some more this morning and was doublechecking the amount to take when i saw down the bottom "Also contains lactose and gluten". WTF?! i just dont get why there is gluten in stuff like that! How long did it take other people to remember to check every single damn thing that they put in their mouth?

Yeah for you and your recovery!!!! I wish I could say the same. When you say, "there was nothing noticeably wrong with my tongue it just felt bad," what do you mean by that? and how long have you had your mouth problem? you sound like me....

Hi Dahlia - I'm doing this right now as well, so you're not alone!!

Currently I'm not eathing: beans, nuts, sugars, yeasts, nightshades, dairy and gluten. It's a lot to cut out. But I seem to be feeling much better for it. I think my body just really needed a break after 10 years of misdiagnosis.

So, can you have honey? There are a few recipe sites for a diet called "The Specific Carbohydrate Diet' that only use honey as a sweetener - heavy on nut flours though.

If you cut all of that from your diet, what do you eat?

I also get mouth, or should I say tongue, irritations. I have a geographic tongue and when I get a trace amount of gluten - such as second hand beer from kissing, my tongue gets circles and ridges and it is tender. This is always my first and sometimes only sympton of being glutened.

And how long does yours stick around? HOw long until your tongue feels normal? I just posted more about my tongue issues on this board. Let me know if it sounds like you!

Do you have any other symptoms? Were you checked for Pernicious Anemia or a dietary B12 deficiency (this can be treated with oral B12, whereas PA requires B12 injections for life). A sore, "beefy" tongue is a common symptom.

Do you regularily replace your toothbrush? Did you replace your brush as soon as you were treated for "thrush"? Do you drink a lot of sodas?

Do you have sores, itchiness, etc, in your throat or aside from your tongue? If you've had unprotected oral sex, did your doctor screen you for oral STI's? They happen!

Of course, it could just be plain old allergies....but it doesn't really sound like it. Is there swelling? Or maybe a really stubborn yeast infection, or you may have unknowingly reinfected yourself. Or, good old irritation from acidic foods, etc.

Hmmm....this is a good one! Time to call House! Lol!

I like all of the questions you pose.

Yes, of course I have other symptoms. I used to have a ton of alternating C&D. Then, when I went gluten-free, that went away. Yesterday I hit a huge wall of being fatigued...my body gets like a deadweight...this is occassionally. If I know I've been glutened I will get dizzy and right eye twitches and just not feel right. BUT....all of this resolves generally EXCEPT for the mouth.

I am not anemic. Never been check for PA. I do switch toothbrushes frequently. I do not drink soda...except for when I drink, which is about once every other week and consists of Vodka/Sprite.

I do not have sores, itchiness, ect in my throat. Well, my throat has been burning for the past few days, but I overall feel crappy. I actually had my tonsils removed about 3 years ago. I had them removed because I had chronic tonsillitis...so them and my adenoids came out. It was shortly after they came out that the tongue/mouth thing started happening. This is not from an STI...no oral sex here recently AND there is nothing VISIBLE in my mouth. When I was younger I used to get cracks in the corners of my mouth and more canker sores....that was like in High School and early college.

My tongue does not swell. The Densist said my mouth/tongue looks normal...and that's who first brought it to my attention about the food allergies. Here is a typical day of food for me:

(I don't change it much) If you see any QUESTIONABLE things...let me know!

1. Gluten free apple sausage links from whole foods

2. Tofu

3. Apples w/ cinnamon

4. Starbucks light roast coffee

5. 2 packs splenda

6. Blue Diamond Almond milk vanilla unsweetened

7. tuna

8. lettuce

9. brocolli

10. cauliflower

11. carrots

12. quinoa

13. olive oil

14. flax seed oil

15. pear

16. grilled chicken

17. strawberries

18. brussel sprouts

19. small red beans

20. burts bees chapstick on lips

22. vitamins, which are all gluten-free

I'm seriously going nuts with my mouth. It makes me frustrated and want to cry.

If anyone else wants to comment...please feel free to chime in!!!

what kind of mouth irritations do you get? I have been gluten-free for almost 2 weeks (still eating some by accident i think) and the last couple days i have 1) been soooo hungry and 2) my mouth feels really sensitive. you know when u eat heaps of salty or sugary things and your tongue feels sensitive and your teeth feel razor sharp on your tongue? its been like that for days but i havent been eating anything that would normally cause it.

btw this forum has been so helpful to me in the last few weeks. i was only diagnosed about 6 weeks ago, had the biopsy to confirm 2 weeks ago and am struggling with the new gluten free life! its very isolating hey? luckily friends family and workmates are being understanding, and theres a lot of info out there.

My mouth irritations:

I have this irritating pain in my mouth...mostly the sides of my tongue, mid-tongue and the roof of my mouth. I have been treated for Thrush because the dr said, "just in case." Well, I did NOT have thrush...this was 2 years ago. I have continued to have a chronically annoyed and sore tongue.

I have gone gluten free for awhile now, and there are some days when "mysteriously" my tongue is better. Most days, though, still annoyed. Does this sound like your tongue?

Yes, I'm finding this, too... especially with dairy. I'm not sure what the chips were cooked in, but I've checked with the manufacturer and the chips are not on their gluten-free list, so gluten is possible. It's good to know that there might be other explanations than just gluten and I will definitely pay close attention to cottonseed oil. Very interesting! Thanks!

I have this with chips, too. Everytime I go to El Belazo and get their chips...thinking they are okay, I wake up with the worst left-sided pain the next day. And I'm always nauseated in the morning. Also, I'm wondering about something else you all said...."once you went gluten-free, you developed many more sensitivities." Why is this? There are so many things I cannot tolerate now. While a lot of my gastro symptoms went away, I have others that came and others that just linger and linger and linger. Does anyone have any good articles or knowledge about why this is?

My mouth gets irritated after about half an hour. After that, I get a series of GI symptoms.

Here we go...I FINALLY found someone who gets mouth irritations!!! Can you please tell me what happens to your mouth?

Nutribiotic--california brown rice protein

Thanks! Where did you get it?

i have this rice protein powder you can mix in water or juice or what not, totally free of everything--is it worth it? does anyone take protein drinks for an extra boost? i could use some weight and fiber, has lots of that. i'm still weary of carbs yet.

Do you know what brand it is? I really need a protein powder, too, but I can't find one that I can have. What is all in that one? I need quick and easy high protein meals!

I haven't called specifically on that one, BUT

The syrups they use in the lattes are gluten-free ... just check to be sure the pumpkin syrup is like the others (in the same kind of bottle as all the rest), I would guess it is. Then you just have to see what they sprinkle on top ... I think it's just cinnamon.

Same with the Frapp. The bases are gluten-free ... just check the syrup and the topping while you're at the store.

The whipped cream is gluten-free.

Do you...or does anyone know if there is any egg or egg derivitive in the Pumpkin Spice Latte? The last time I had it I got bad again for a couple of weeks?!?

I get something akin to a gall bladder attack if I eat eggs. Perhaps it IS a gall bladder attack Two doctors over the years checked me out and never saw any gall stones (although now I realize that such testing is not conclusive and there can be problems other than stones). That pain is in the side -- is that where you get your pain?

Accompanying this is nausea that increases with time. It is as if the food in my stomach is not being digested. It just sits there. The only way to get over an attack is not to eat. After a couple days I start to get better.

Grim, stuff, but you asked

When I was young, I could eat eggs. Then I've gotten increasingly intolerant. First I just couldn't have straight eggs. Then I started having problems with things like pancakes. Now the tiniest bit of egg in something can create problems (although not always).

Yes, my pain is on my side. I'm trying to determine if it's from egg?

I have been feeling better the past couple of days, but this morning I woke up with a stomach ache and:

1. Around 7:30 am had gassy, D come out.

2. Around 10:30 am had long, brown and floating stools come out

3. Have had dull left side pain

Anyone else have this?

Anyone out there have an egg tolerance and get symptoms in their mouth, lower abdominal pain and eye twitch?

Michelle, I had a "detox" period when I gave up gluten, and it lasted for a couple of weeks. At the worst of it, I had body aches and an awful headache, like I was getting the flu. I felt vaguely nauseous, had no appetite, and had a head fog as thick as pea soup. Then one day, near the end of the second week, it all lifted and I started feeling better. It still took a few weeks to normalize completely, for me, but I never again felt as badly as I did for those 2 weeks. It could be that you're going through something similar. Both of my kids experienced gluten "withdrawal" as well, so I don't think it's uncommon. Drink lots of water!!! Hope you feel better soon!

Rho

I agree, I'm always really bad for 2 weeks after as well. It's literally on the 13th or 14th day that things start to disappear. I wonder why that timing is?!

If I am intolerant to Soy, do I need to stay away from Tofu? Would Tofu affect me?