My First Post, New To Intolerance And Still In Distress

[AnnJay]

Gluten is not my friend. A few months ago I realized the digestive distress was caused by gluten. After removing the main sources, I then proceeded to make all the newbie mistakes with the hidden gluten. Since my reaction Lasts for 3-4 days, I have had few days of feeling healthy in the last 2 months. Some examples of the hidden culprits include the caramel color in balsamic vinegar, gluten-free pizza from a pizza parlor, gluten-free ice cream from Ben n Jerry's ice cream parlor, margaritas from a restaurant, etc.

Even with my increased knowledge and vigilance, I am still getting sick! My symptoms include many of the usual; diarrhea, severe cramping that can even wake me up at night, depression, brain fog, ...probably more but im currently depressed and in a brain fog. So now I'm keeping a food journal and trying to limit corn and soy. I'm already lactose intolerant and limit dairy (plus take lactaid). And I am as vigilant as possible about keeping my food separate from my husband's and children's, though I can get resentful about all they can eat.

Medically, I already had a blood test come back negative for Celiac (3 antibodies tested). The next step is to see a gastroenterologist. I have read about stool tests done by chiropractors and acupuncturists, but the medical community is not convinced of their accuracy. I'm not sure I want to pay lots of money for something that isn't accurate. On the other hand, what could a gastroenterologist do for me, other than rule out parasites and bacterial infections?

Does anyone here have any experience with the medical side to share?

Anyone have a suggested food plan for discovering other possible intolerances?

[Squoddybody]

I can't tolerate any vinegar, at all. When I asked my doctor, he reminded me that the most common ingredient used to make vinegar is malt... yeah, that has gluten. Vinegar is in EVERYTHING I love.

I've also found hidden gluten in the same you've mentioned. Everyday I find more and more things that I just cannot tolerate.

Basically, the Atkins diet is the best chance I have for remaining gluten-free. I have been eating clean-Atkins type for the past three months. Most of the time I feel amazing; better than I have felt for years! Not to mention, I have lost about 20 lbs. There are days when I slip accidentally and then have a few days of relapse, but for the most part, I'm feeling better and getting healthier everyday.

[kareng]

I can't tolerate any vinegar, at all. When I asked my doctor, he reminded me that the most common ingredient used to make vinegar is malt... yeah, that has gluten. Vinegar is in EVERYTHING I love.

Just a clarification: Most vinegar does not contain malt. Only "malt vinegar" contains barley malt. It will say "malt vinegar" on the ingredients.

[GFinDC]

Hi,

The standard testing for celiac is the blood antibodies and then an endoscopy. They should take 5 or so biopsy samples during the endoscopy to have them checked for villi blunting at a lab. None of the testing is useful for detecting celiac if you are already gluten free or gluten lite.

There is very limited food intolerance testing available. Lactose intolerance and fructose intolerance testing can be done by your doctor. Enterolabs does testing for some additional intolerances like egg and a few others. Beyond that the best option is an elimination diet.

[kittty]

There are a couple of different kinds of balsamic vinegar. There is the traditional kind which is made from pressed grapes, like wine. Then there is the common kind which isn't technically balsamic vinegar, but more of an imitation made from wine vinegar and other additives. It often has the word "Modena" in the name, and it's the kind of stuff that most chain restaurants serve.

If you really love balsamic you might want to try some of the traditional kind and see if you still have a reaction. It can be expensive (depending on the quality and age) but sometimes places like Williams Sonoma have tastings where you can try before you buy.

The pizza and ice cream makes sense, because there is so much opportunity for cross contamination. My biggest hurdle was soy sauce - I had no idea at first that it contained gluten! But if you go to an Asian market it's not too hard to find cheap gluten-free soy sauce, especially the Vietnamese made ones.

[AnnJay]

There are a couple of different kinds of balsamic vinegar. There is the traditional kind which is made from pressed grapes, like wine. Then there is the common kind which isn't technically balsamic vinegar, but more of an imitation made from wine vinegar and other additives. It often has the word "Modena" in the name, and it's the kind of stuff that most chain restaurants serve.

If you really love balsamic you might want to try some of the traditional kind and see if you still have a reaction. It can be expensive (depending on the quality and age) but sometimes places like Williams Sonoma have tastings where you can try before you buy.

The pizza and ice cream makes sense, because there is so much opportunity for cross contamination. My biggest hurdle was soy sauce - I had no idea at first that it contained gluten! But if you go to an Asian market it's not too hard to find cheap gluten-free soy sauce, especially the Vietnamese made ones.

I started using red wine vinegar instead. I do have tamari (wheat free soy sauce) but now I suspect that I am reacting to soy as well. I'm certainly reacting to something! Today is day 1 of eliminating all kinds of foods; soy, and corn in addition to the gluten. Hopefully my bowels will recover soon. Then I can start the challenge diet and learn more about what I can and cannot eat. I wish there was a shorter path to that destination!

[AnnJay]

Hi,

The standard testing for celiac is the blood antibodies and then an endoscopy. They should take 5 or so biopsy samples during the endoscopy to have them checked for villi blunting at a lab. None of the testing is useful for detecting celiac if you are already gluten free or gluten lite.

There is very limited food intolerance testing available. Lactose intolerance and fructose intolerance testing can be done by your doctor. Enterolabs does testing for some additional intolerances like egg and a few others. Beyond that the best option is an elimination diet.

Have you done an elimination diet? I've been reading online but could use some pratical advice.

[GFinDC]

Hi Ann,

Yep, I have done them several times. There are lots of threads on the forum about them actually. But the idea is simple. You remove most foods from your diet so you eliminate the confusion factor. Then slowly add one food at a time. Starting out with 5 foods is often recommended. That way you have some variety. You choose your 5 starting foods from things that you don't think will cause a reaction. Whole foods only of course. Eat only those 5 foods for 2 weeks and if your digestion is better add one new food. Keep eating that lots of the new food for 3 days. If there are no problems add another food. This way you can build up a list of safe foods for your body.

[AnnJay]

My diarrhea was so bad I was dehydrated and tired. A nurse friend suggested that I drink Gatorade G 2 and said its gluten free. I had about 24 oz all day, diluted with water. At the end of the day I had my first migraine headache in my life. Then I realized that there is CORN in the G2. Drag. So much for the first day of my elimination diet!

Today I learned that tomatoes may be a problem. Do you think I will react the same to cooked tomatoes as to raw ones?

Tonight dinner will be steak, potatoes, and vegetables. Tomorrow I will make chicken soup. I will probably eat the chicken soup for a couple of days to try to regain health. That way I can have my food on hand, and only have to cook for my family, rather than cooking two separate meals every night.

Only 5 foods, huh. For 2 weeks? OMG. Can I count root vegetables as 1 of the 5? And I'm worried that I'll CAUSE a problem by eating too much rice or quinoa. I'd like to be able to eat both. Rice, quinoa, chicken, beef, onions, garlic, zucchini, carrots, cucumbers, lettuce, avocados, spinach...does that sound like a good starting list? Oh, and celery, too, for the soup. Ginger as well.

Back to hunting for a gastroenterologist. Has anyone actually had a gastro HELP them in their journey towards health? Just curious.

[GFinDC]

My diarrhea was so bad I was dehydrated and tired. A nurse friend suggested that I drink Gatorade G 2 and said its gluten free. I had about 24 oz all day, diluted with water. At the end of the day I had my first migraine headache in my life. Then I realized that there is CORN in the G2. Drag. So much for the first day of my elimination diet!

Today I learned that tomatoes may be a problem. Do you think I will react the same to cooked tomatoes as to raw ones?

Tonight dinner will be steak, potatoes, and vegetables. Tomorrow I will make chicken soup. I will probably eat the chicken soup for a couple of days to try to regain health. That way I can have my food on hand, and only have to cook for my family, rather than cooking two separate meals every night.

Only 5 foods, huh. For 2 weeks? OMG. Can I count root vegetables as 1 of the 5? And I'm worried that I'll CAUSE a problem by eating too much rice or quinoa. I'd like to be able to eat both. Rice, quinoa, chicken, beef, onions, garlic, zucchini, carrots, cucumbers, lettuce, avocados, spinach...does that sound like a good starting list? Oh, and celery, too, for the soup. Ginger as well.

Back to hunting for a gastroenterologist. Has anyone actually had a gastro HELP them in their journey towards health? Just curious.

How about this for a starting list?

chicken

onions,

mushrooms

eggs,

peas

oranges

You could include salt and black pepper also, as people rarely have reactions to them. That's 6 plus salt and pepper is 8 foods. I'd skip both the rice and the quinoa. Peas are good because the have a lot of fiber and they go well with other foods. Eggs are a good 2nd source of protein, plus they are nice for breakfast. You can make several different meals with that list of foods. If were you I would add corn tortillas as a first food addition, so you can make wraps.

The idea is to simplify your diet so you can identify problems or reactions to foods. So the fewer foods you are eating the more likely you are to figure out which one is making you sick.

Tomatoes cooked or raw will probably both be a problem IMHO. If they really are a problem. Until you digestion is somewhat settled it's hard to tell what is setting things off. If tomatoes are a problem then you may find white potatoes and peppers a problem also, and eggplant. The are all members of the nightshade family and people tend to react to all of them.

[Bubba's Mom]

Gluten is not my friend. A few months ago I realized the digestive distress was caused by gluten. After removing the main sources, I then proceeded to make all the newbie mistakes with the hidden gluten. Since my reaction Lasts for 3-4 days, I have had few days of feeling healthy in the last 2 months. Some examples of the hidden culprits include the caramel color in balsamic vinegar, gluten-free pizza from a pizza parlor, gluten-free ice cream from Ben n Jerry's ice cream parlor, margaritas from a restaurant, etc.

Even with my increased knowledge and vigilance, I am still getting sick! My symptoms include many of the usual; diarrhea, severe cramping that can even wake me up at night, depression, brain fog, ...probably more but im currently depressed and in a brain fog. So now I'm keeping a food journal and trying to limit corn and soy. I'm already lactose intolerant and limit dairy (plus take lactaid). And I am as vigilant as possible about keeping my food separate from my husband's and children's, though I can get resentful about all they can eat.

Medically, I already had a blood test come back negative for Celiac (3 antibodies tested). The next step is to see a gastroenterologist. I have read about stool tests done by chiropractors and acupuncturists, but the medical community is not convinced of their accuracy. I'm not sure I want to pay lots of money for something that isn't accurate. On the other hand, what could a gastroenterologist do for me, other than rule out parasites and bacterial infections?

Does anyone here have any experience with the medical side to share?

Anyone have a suggested food plan for discovering other possible intolerances?

I just wanted to add..20-30% of us test negative in our blood work but have Celiac disease anyway. A GI can do an endoscope to check how your stomach lining and intestines look. Biopsies can be done at that time.

I tested negative but was scoped. My Celiac was found by the endoscope.

It would be a good idea to take probiotics. A small intestine bacterial overgrowth (SIBO) can cause reactions to a lot of various foods. The bacteria feed on what you've eaten and emit toxins, which you react to. A GI can test for this also. IMHO it would be a good idea to see a GI to see if anything can be sorted out for your food reactions. If you do indeed have Celiac, you will have to be extra concerned about trace gluten because it could keep your immune system inflamed and open the door to additional auto-immune diseases.

[AnnJay]

How about this for a starting list?

chicken

onions,

mushrooms

eggs,

peas

oranges

Tomatoes cooked or raw will probably both be a problem IMHO. If they really are a problem. Until you digestion is somewhat settled it's hard to tell what is setting things off. If tomatoes are a problem then you may find white potatoes and peppers a problem also, and eggplant. The are all members of the nightshade family and people tend to react to all of them.

Thanks for the nightshade family reminder! I remember reading about them, and that tomatoes are part of that family, but I couldn't remember the other ones. I did cook eggplant last night but didn't eat because of the possible connection. Instead I ate broccoli. BUT, I also ate the potato because I FORGOT it was part of the nightshades! Doh! Guess that makes me half right and half wrong, lol! Fortunately no diarrhea yet today, but there's always tomorrow...

As for the 5 foods, i prefer to try eggs later, as they've given me stomach upset in the past and I usually just limit how often I eat them. Mushrooms I will skip too, because of the Candida diet business. Even though I dont fully believe that's my problem, it couldn't hurt to follow the general guidelines. Oranges are good, but not in season right now. Corn is one of my suspected troubles so I'd prefer to add it later, even though it is in so many foods in so many ways.

Chicken, onions, peas, ...

Add a fruit and something else...brown rice and strawberries? Watermelon? broccoli? Carrots?

And, a BIG thank you for your replies and suggestions. I've been reading a lot of threads on this forum, but it is SO helpful to have a helping hand while I stumble around trying to get healthy again. I've been feeling stuck and alone with my symptoms.

[AnnJay]

I just wanted to add..20-30% of us test negative in our blood work but have Celiac disease anyway. A GI can do an endoscope to check how your stomach lining and intestines look. Biopsies can be done at that time.

I tested negative but was scoped. My Celiac was found by the endoscope.

It would be a good idea to take probiotics. A small intestine bacterial overgrowth (SIBO) can cause reactions to a lot of various foods. The bacteria feed on what you've eaten and emit toxins, which you react to. A GI can test for this also. IMHO it would be a good idea to see a GI to see if anything can be sorted out for your food reactions. If you do indeed have Celiac, you will have to be extra concerned about trace gluten because it could keep your immune system inflamed and open the door to additional auto-immune diseases.

Thank you. I now have an appointment with a gastro for Sept. 19th. Wish it were sooner, as this is just a consult. And I suppose I'll have to eat gluten again before the scope. Scary. Today I am feeling better! Just tired. But no headache and only small, occasional intestinal cramps. No corn, gluten or soy for a few days, but otherwise quite a variety. Well, variety compared to reducing down to a list of 5, LOL!

[GFinDC]

Thanks for the nightshade family reminder! I remember reading about them, and that tomatoes are part of that family, but I couldn't remember the other ones. I did cook eggplant last night but didn't eat because of the possible connection. Instead I ate broccoli. BUT, I also ate the potato because I FORGOT it was part of the nightshades! Doh! Guess that makes me half right and half wrong, lol! Fortunately no diarrhea yet today, but there's always tomorrow...

As for the 5 foods, i prefer to try eggs later, as they've given me stomach upset in the past and I usually just limit how often I eat them. Mushrooms I will skip too, because of the Candida diet business. Even though I dont fully believe that's my problem, it couldn't hurt to follow the general guidelines. Oranges are good, but not in season right now. Corn is one of my suspected troubles so I'd prefer to add it later, even though it is in so many foods in so many ways.

Chicken, onions, peas, ...

Add a fruit and something else...brown rice and strawberries? Watermelon? broccoli? Carrots?

And, a BIG thank you for your replies and suggestions. I've been reading a lot of threads on this forum, but it is SO helpful to have a helping hand while I stumble around trying to get healthy again. I've been feeling stuck and alone with my symptoms.

You are quite welcome. This food intolerance stuff can be confusing at the beginning. I don't think rice is a good choice. It's not a very nutritious food, mostly a bunch of carbohydrates. You want to pick foods that are high nutrition and not likely to cause a reaction. Rice has a chance of being cross contaminated also.

Chicken, onions, peas, avocados, and brussel sprouts or broccolli.

Thank you. I now have an appointment with a gastro for Sept. 19th. Wish it were sooner, as this is just a consult. And I suppose I'll have to eat gluten again before the scope. Scary. Today I am feeling better! Just tired. But no headache and only small, occasional intestinal cramps. No corn, gluten or soy for a few days, but otherwise quite a variety. Well, variety compared to reducing down to a list of 5, LOL!

Ok, hold the phone. Since you haven't finished your testing yet you should not start any diet, except to maybe eliminate dairy. You should not start on the gluten-free diet until all your testing is completed. The antibody tests are not all that accurate anyway, and they are not reliable if you haven't been eating gluten. I think it is better for you to get the testing over with before changing your diet. And then just try going gluten-free and dairy free for a few months to learn that. If you are still having food problems after 6 months then would be a good time to look at an elimination diet.

[AnnJay]

Eeeeeeaaaaaaaggghhh! I couldn't take the pain. Seriously! I know I need to be eating gluten for the villa damage to show in an endoscope. But when the blood test came back negative I assumed I was 'just' gluten intolerant and should avoid gluten. That was in June. Since I am still having problems it seems like seeing a gastroenterologist is the right thing to do. But I can't take the disabling effects of glutinous food right now! I really can't.

I figure that if I really need to, I could eat some gluten a few days before a scope and just plan on being out of commission for a week. Ugh. I still am not sure if the misery would be worth it.

Mostly my husband wants to make sure I don't have a parasite. I'm convinced my problems are connected to foods. I am getting better right now without gluten, soy, and corn. And I may just tell people that I have Celiac Disease if only to highlight the importance of going without gluten contamination. Besides, having all these troubles sure sounds like celiac disease.

As for my children, well, they don't have symptoms right now. But at their next checkup I will talk with their ped about testing them. Since the antibody test didn't seem accurate for me, I wonder if there is a different test that should be done for them.

[AnnJay]

Just an update...

I am finally feeling better! No gluten, no soy, no corn is in my diet. And I can function again.

I will still see the gastro even if any testing won't give accurate results. Other maladies can at least be ruled out, if my progress isn't enough to do that.

Now I just need to educate myself on how to eat out without ingesting any of these poisons.

Thank you again for your support during my troubled times.

[GottaSki]

Welcome AnnJay!

Wasn't sure if something was clear to you because celiac testing is so very frustrating - but keeping gluten in the diet before endoscopy gives the BEST CHANCE for accurate biopsy. This does not mean that it will not be beneficial for you to have one done. It is possible to have a biopsy that is positive shortly after removing gluten, it is just more likely while still ingesting it.

Additionally, if damage is severe it can be observed by the doctor, not just by biopsy. I hope yours is not visible - just letting you know there is value to the procedure even if you can not tolerate the gluten challenge. The endo also looks at other parts of the digestive system and often provides valuable info.

Regarding your children - you mentioned "the antibody test" I'm not sure you had a full celiac panel. The full panel is essential as it gives far more information than the celiac screening tTG IgA test.

Here is the Full Celiac Blood Panel:

Total Serum IgA

Tissue Transglutaminase IgA and IgG

Gliadin IgA and IgG

Endomysial Antibody IgA

Deamidated Gliadin Peptide IgA and IgG

Glad to hear you have had some improvement by removing gluten along with some other foods - I hope you continue to improve each day

[Finally-45]

The carmel color reaction is to corn. I also can't tolerate most vinegars; red wine is ok, but I tend to avoid all of them. Corn vinegar is just as bad on my reactions as gluten-contaminated vinegars.

Check out your reaction to corn.

[shadowicewolf]

I react badly to tomatos (it sets my body literally on fire feeling) and am now allergic to them. If you suspect them, cut them out.