3 months gf - still having problems

[Ms.frustrated]

I have been having stomach problems since I was 15, now 31 and just recently had the blood test, which I asked for, which showed positive for gluten intolerance. My doctor previously diagnosed me with IBS. After the blood test he said to try the gluten-free diet, if it works and I feel better, no need to do the scope. Now, after being on the gluten-free diet for almost 3 months I'm feeling a bit better but still think I should be feeling a lot better than this. I still have urgent rushes to the bathroom and bloating and stomach cramps. I have totally cut out dairy as I noticed lactose intolerance right away. Now I'm wondering if eating gluten-free causes other intelerances as well. Like salsa, mayo, salad, etc. Sometimes I have a reaction and I have no idea why????? I'm so frustrated! I'm depriving myself of lots of food I love so that I feel better but then I still don't feel well! Am I doing all this for nothing?? Should I go back to eating gluten so I can have an acurate scope? Should I do an alergy test that are given by naturopaths? Help!!!!!

[Newbee]

Did they ever test you for celiac disease?

[Mom of Boys]

My first suspicion is there's something you are eating that has gluten in it. Did you check the mayo ingredients, or does it say gluten free on the bottle somewhere? Don't trust ANYTHING not even potato chips. There are some potato chips with gluten. You have to read every single ingredient in your refrigerator and cabinet. Salad is setting you off? What's in the salad dressing? Are you using a pre-packaged salad with little added ingredients? Check EVERYTHING. It took me a good couple months to elimintate everything. Seemed like there was always another thing I sprinkled on, cooked with, or poured on that was glutenous.

And yes, you could have other sensitivities. I'm getting ready to ban all soy, which is going to be rough because now I can't even have my sushi the way I make it! But I will try it because I am fighting vertigo and someone mentioned that soy causes them to be dizzy.

It's trial and error and most of the docs do not give any credance at all to gluten-free living. Mine think it's funny - I KNOW they are laughing behind my back but I don't care. I know it's helping me so I just accept their ignorance and maybe one day they'll learn a thing or two from me!

[Mom of Boys]

My first suspicion is there's something you are eating that has gluten in it. Did you check the mayo ingredients, or does it say gluten free on the bottle somewhere? Don't trust ANYTHING not even potato chips. There are some potato chips with gluten. You have to read every single ingredient in your refrigerator and cabinet. Salad is setting you off? What's in the salad dressing? Are you using a pre-packaged salad with little added ingredients? Check EVERYTHING. It took me a good couple months to elimintate everything. Seemed like there was always another thing I sprinkled on, cooked with, or poured on that was glutenous.

And yes, you could have other sensitivities. I'm getting ready to ban all soy, which is going to be rough because now I can't even have my sushi the way I make it! But I will try it because I am fighting vertigo and someone mentioned that soy causes them to be dizzy.

It's trial and error and most of the docs do not give any credance at all to gluten-free living. Mine think it's funny - I KNOW they are laughing behind my back but I don't care. I know it's helping me so I just accept their ignorance and maybe one day they'll learn a thing or two from me!

One more thing - by getting a diagnosis, the only thing that means is that you need to eat gluten free. There's no help, no medicine, no perk of any kind to having the official diagnosis. And chances are it's going to come back negative anyway - mine did. My advice for what it's worth is don't bother with the testing because that requires that you continue to eat the foods that you think are making you sick until the appointed date. Just declare yourself gluten intolerant, and refuse to put anything in your mouth that has gluten in it. Even if you suspect it MIGHT be glutenous, just don't eat it. Give yourself a couple more months of being RIDICULOUSLY careful and see how you feel.

[rosetapper23]

You mention mayo--did you know that mayo now contains soy? They put soy in everything now! Many celiacs are intolerant of soy, so you might try eliminating it. BTW, it's found in most canned tuna, too, and in almost all salad dressings. The tuna from Whole Foods and Trader Joe's doesn't have soy in it, though.

[Ms.frustrated]

Did they ever test you for celiac disease?

The blood test I had showed a high probability for celiac but they can confirm unless I have a scope done. But now being on the gluten-free diet for 3 months, I don't think a scope at this time would be acurate.

[Ms.frustrated]

You mention mayo--did you know that mayo now contains soy? They put soy in everything now! Many celiacs are intolerant of soy, so you might try eliminating it. BTW, it's found in most canned tuna, too, and in almost all salad dressings. The tuna from Whole Foods and Trader Joe's doesn't have soy in it, though.

Funny you mention tuna because the thing that set me off yesterday was I had a tuna sandwich (my first sandwich since going gluten-free) made my own bread and everything. I put a small amount of mayo in the tuna, which normally I don't care for mayo. Nothing in the ingredients in the mayo had gluten. It's Hellmans light. I'll have to check the tuna can and maybe try eliminating soy. Thanks!

[Ms.frustrated]

One more thing - by getting a diagnosis, the only thing that means is that you need to eat gluten free. There's no help, no medicine, no perk of any kind to having the official diagnosis. And chances are it's going to come back negative anyway - mine did. My advice for what it's worth is don't bother with the testing because that requires that you continue to eat the foods that you think are making you sick until the appointed date. Just declare yourself gluten intolerant, and refuse to put anything in your mouth that has gluten in it. Even if you suspect it MIGHT be glutenous, just don't eat it. Give yourself a couple more months of being RIDICULOUSLY careful and see how you feel.

I do feel like I'm being carefull, reading ingredients etc. but maybe there is something that I'm missing. The only reason I want to do the testing is so I have something verified. I feel like I've been doing all this for nothing and it's a big change in lifestyle. Plus I have two kids and it gets expensive. But I will keep plugging along and see if there is something that I'm doing wrong. I don't think I eat many items with soy but that seems to be something that bothers others???

[Ms.frustrated]

My first suspicion is there's something you are eating that has gluten in it. Did you check the mayo ingredients, or does it say gluten free on the bottle somewhere? Don't trust ANYTHING not even potato chips. There are some potato chips with gluten. You have to read every single ingredient in your refrigerator and cabinet. Salad is setting you off? What's in the salad dressing? Are you using a pre-packaged salad with little added ingredients? Check EVERYTHING. It took me a good couple months to elimintate everything. Seemed like there was always another thing I sprinkled on, cooked with, or poured on that was glutenous.

And yes, you could have other sensitivities. I'm getting ready to ban all soy, which is going to be rough because now I can't even have my sushi the way I make it! But I will try it because I am fighting vertigo and someone mentioned that soy causes them to be dizzy.

It's trial and error and most of the docs do not give any credance at all to gluten-free living. Mine think it's funny - I KNOW they are laughing behind my back but I don't care. I know it's helping me so I just accept their ignorance and maybe one day they'll learn a thing or two from me!

No, the mayo didn't say gluten free but I checked the ingredients. I'm usually pretty good with checking labels but it's the ingredients that I don't know what they are that are confusing. Hard to remember what's what.

I can't believe doctors are so ignorant about this. My doctor never even suggesting Celiac to me, it was my idea! I wonder why they are like this and not more helpful?? Thanks so much for your advice.

[lovegrov]

I've never seen a mayo that has gluten. Unless somebody contaminated it by dipping in after spreading it on bread, mayo is not a gluten concern.

richard

[GFinDC]

Mayo usually has soy in it, but I haven't seen gluten in it. There are versions without soy, like canola oil mayo. Tuna usually has soy, and many, many other processed foods have soy as well as corn and gluten. All three of them are used as well as eggs and dairy in lots of different foods that are processed.

Eating lots of processed/baked gluten-free foods may not be a good idea if you are new to the gluten-free diet. It is better to eat whole foods and cook from scratch at home. Knowing what you are putting in your body food wise is very important for a celiac. Our digestive systems are not the same as other peoples and don't always take kindly to many things that don't bother other people. A simple diet with few ingredients is easier to work with because you can narrow down the possible problem foods more easily. So picking up a package of food with 1 to 3 ingredients is better than choosing a food with 10 ingredients. There's less to keep track of and less to possibly cause problems. And whole foods are usually a better bargain than processed foods too.

[Mom of Boys]

Mayo usually has soy in it, but I haven't seen gluten in it. There are versions without soy, like canola oil mayo. Tuna usually has soy, and many, many other processed foods have soy as well as corn and gluten. All three of them are used as well as eggs and dairy in lots of different foods that are processed.

Eating lots of processed/baked gluten-free foods may not be a good idea if you are new to the gluten-free diet. It is better to eat whole foods and cook from scratch at home. Knowing what you are putting in your body food wise is very important for a celiac. Our digestive systems are not the same as other peoples and don't always take kindly to many things that don't bother other people. A simple diet with few ingredients is easier to work with because you can narrow down the possible problem foods more easily. So picking up a package of food with 1 to 3 ingredients is better than choosing a food with 10 ingredients. There's less to keep track of and less to possibly cause problems. And whole foods are usually a better bargain than processed foods too.

Totally agree with this. Just take your cooking down to a basic level and don't use anything that you aren't 100 percent sure about. Pretend it's your first day and question EVERYTHING. If you suspect soy, just avoid it altogether too. You can always test it later, once you have your feet on the ground again.

[GottaSki]

The blood test I had showed a high probability for celiac but they can confirm unless I have a scope done. But now being on the gluten-free diet for 3 months, I don't think a scope at this time would be acurate.

Do you have the results from this blood test? Do you know which tests they ran?

You mentioned that you have had stomach issues for at least 16 years...it can take some time to heal the damage that is caused by Celiac Disease. That you are reacting to other foods is another clue that you have serious damage - damage that could get worse if you go back on gluten for the three months necessary in order to have an endoscopy.

The first months of the gluten-free diet are the most frustrating. There is still a possibility that you are getting small amounts of gluten somewhere, but it is more likely that you are reacting to other foods simply because of the damage that needs to heal. Try to remove as many processed foods as possible during healing. Keeping your diet to simple whole foods will speed healing. Once healed many people are able to eat the foods that bothered them when first dx'd.

Hang in there

[Ms.frustrated]

Totally agree with this. Just take your cooking down to a basic level and don't use anything that you aren't 100 percent sure about. Pretend it's your first day and question EVERYTHING. If you suspect soy, just avoid it altogether too. You can always test it later, once you have your feet on the ground again.

Great advice, thanks! It will be a struggle but totally worth it. I had to miss my nephews birthday party along with my kids being so disapointed....I can't wait to feel better!! Thanks!

[Ms.frustrated]

Do you have the results from this blood test? Do you know which tests they ran?

You mentioned that you have had stomach issues for at least 16 years...it can take some time to heal the damage that is caused by Celiac Disease. That you are reacting to other foods is another clue that you have serious damage - damage that could get worse if you go back on gluten for the three months necessary in order to have an endoscopy.

The first months of the gluten-free diet are the most frustrating. There is still a possibility that you are getting small amounts of gluten somewhere, but it is more likely that you are reacting to other foods simply because of the damage that needs to heal. Try to remove as many processed foods as possible during healing. Keeping your diet to simple whole foods will speed healing. Once healed many people are able to eat the foods that bothered them when first dx'd.

Hang in there

wow, that makes total sense. What foods do you suggest that would be the easiest on my stomach? I've notice pineapple, once a favorite, is no longer tolerable. I'm afraid to eat fresh fruit sometimes because of the acidity, which, when I started to eat gluten-free, fruit was my safe "go to" food. Not anymore! Do you think quinoa is ok? What about meats? I'm looking for any suggestions on what others have tried who may have had this sensitivity problem like myself. What about eggs? Also, I was wondering if maybe my birth control is safe? I called the company and they said nothing in the ingredients has gluten but is made in a factory where gluten is present. Do you think this is risky being a medication not a food?

[Ms.frustrated]

Do you have the results from this blood test? Do you know which tests they ran?

You mentioned that you have had stomach issues for at least 16 years...it can take some time to heal the damage that is caused by Celiac Disease. That you are reacting to other foods is another clue that you have serious damage - damage that could get worse if you go back on gluten for the three months necessary in order to have an endoscopy.

The first months of the gluten-free diet are the most frustrating. There is still a possibility that you are getting small amounts of gluten somewhere, but it is more likely that you are reacting to other foods simply because of the damage that needs to heal. Try to remove as many processed foods as possible during healing. Keeping your diet to simple whole foods will speed healing. Once healed many people are able to eat the foods that bothered them when first dx'd.

Hang in there

oh yeah, the receipt I have from the blood test says TTGA antibody. I never recieved a copy of the results, was just told I was in the moderate to high range for gluten intolerance/celiac.

[GottaSki]

What foods do you suggest that would be the easiest on my stomach? I've notice pineapple, once a favorite, is no longer tolerable. I'm afraid to eat fresh fruit sometimes because of the acidity, which, when I started to eat gluten-free, fruit was my safe "go to" food. Not anymore! Do you think quinoa is ok? What about meats? I'm looking for any suggestions on what others have tried who may have had this sensitivity problem like myself. What about eggs? Also, I was wondering if maybe my birth control is safe? I called the company and they said nothing in the ingredients has gluten but is made in a factory where gluten is present. Do you think this is risky being a medication not a food?

I'm not feeling very well this evening - but will check back to see if your questions got answered...if not I will try to answer them in the morning.

[GottaSki]

oh yeah, the receipt I have from the blood test says TTGA antibody. I never recieved a copy of the results, was just told I was in the moderate to high range for gluten intolerance/celiac.

The blood test you mentioned looks like the tTG IgA (common first test for Celiac screening) - if it is positive you have Celiac Disease. Positive is always positive, while false negatives do happen. Hard to tell what "moderate" and "high range" are without the actual test result numbers, but I can tell you I was in the "weak" positive for Celiac on the IgA, but did have very severe Celiac Disease damage in my intestines. It is preferred to have an entire Celiac blood panel, but given your high range leaves no doubt in my mind that you need to remove gluten for life. I don't think it is worth risking further damage to get testing completed, but understand if you want an official diagnosis.

[GottaSki]

wow, that makes total sense. What foods do you suggest that would be the easiest on my stomach?

The best foods for recently diagnosed are meat, vegies and fruit. Some Celiacs are able to just remove gluten, while others need to limit gluten-free processed foods -- then there are some that need to remove more. The groups of foods that can cause problems are Lectins: Dairy, Eggs (yolk only - white fine), Nightshades (potato, tomato, peppers, eggplant), Grains, Legumes (soy, beans, peanuts), Nuts & Seeds.

There are two ways to figure out what to remove:

#1 full elimination diet where you remove all the groups listed above for two weeks and then add one item back in - at least three days apart as some reactions are delayed - keep a food/symptom log.

#2 keep a food/symptom log to remove items as they bother you. This has worked for many people - for me it seemed like I was reacting to everything and not always every time I ate the same foods so it was very confusing -- I even tried removing one group at time, but never gained any clear answers.

Once you find problem foods remove them for at least 6 months then re-trial them - eventually the gut heals and many of the foods will no longer be a problem.

I've notice pineapple, once a favorite, is no longer tolerable. I'm afraid to eat fresh fruit sometimes because of the acidity, which, when I started to eat gluten-free, fruit was my safe "go to" food. Not anymore!

I had a slight problem with orange juice for the couple years before dx - post dx I had severe bloating with all citrus - also lost pineapple later. You should still be able to eat all other fruits (apple, banana, peach, pear, grapes, melon, etc.)...don't take them away unless you have a problem with them.

Do you think quinoa is ok?

Maybe - many folks have no problem quinoa.

I'm looking for any suggestions on what others have tried who may have had this sensitivity problem like myself. What about eggs?

There are many threads in the "other food intolerance/leaky gut" section of this forum.

Also, I was wondering if maybe my birth control is safe? I called the company and they said nothing in the ingredients has gluten but is made in a factory where gluten is present. Do you think this is risky being a medication not a food?

I don't know. You might want to search the brand name here on this site or ask others.

Good Luck to you

[Ms.frustrated]

I'm not feeling very well this evening - but will check back to see if your questions got answered...if not I will try to answer them in the morning.

thank you!!!

[Ms.frustrated]

The best foods for recently diagnosed are meat, vegies and fruit. Some Celiacs are able to just remove gluten, while others need to limit gluten-free processed foods -- then there are some that need to remove more. The groups of foods that can cause problems are Lectins: Dairy, Eggs (yolk only - white fine), Nightshades (potato, tomato, peppers, eggplant), Grains, Legumes (soy, beans, peanuts), Nuts & Seeds.

There are two ways to figure out what to remove:

#1 full elimination diet where you remove all the groups listed above for two weeks and then add one item back in - at least three days apart as some reactions are delayed - keep a food/symptom log.

#2 keep a food/symptom log to remove items as they bother you. This has worked for many people - for me it seemed like I was reacting to everything and not always every time I ate the same foods so it was very confusing -- I even tried removing one group at time, but never gained any clear answers.

Once you find problem foods remove them for at least 6 months then re-trial them - eventually the gut heals and many of the foods will no longer be a problem.

I had a slight problem with orange juice for the couple years before dx - post dx I had severe bloating with all citrus - also lost pineapple later. You should still be able to eat all other fruits (apple, banana, peach, pear, grapes, melon, etc.)...don't take them away unless you have a problem with them.

Maybe - many folks have no problem quinoa.

There are many threads in the "other food intolerance/leaky gut" section of this forum.

I don't know. You might want to search the brand name here on this site or ask others.

Good Luck to you

Thanks, I will try that. I wasn't aware that even labelled gluten free products could be a problem. That might explain a lot. What about dairy products that are lactose free? Should I stay away from them as well? I'm like you with the eliminating food. I've tried that, maybe not as strickly as I should have, but sometimes I can eat something and be fine. The next time I eat it I am sick. It's so hard to figure out. I am definitely glad I joined this forum! I've recieved more information here in the last couple days than from my dr.

[GottaSki]

What about dairy products that are lactose free? Should I stay away from them as well?

I'm not familiar with lactose free dairy products - I challenged regular milk, cream, yogurt, cheese and butter - I guess I never tried lactose free dairy as it seemed they all had soy &/or a long list of ingredients - I avoid any ingredient I can't pronounce . Maybe someone else can answer this question?

[gemini1962]

wow, that makes total sense. What foods do you suggest that would be the easiest on my stomach? I've notice pineapple, once a favorite, is no longer tolerable. I'm afraid to eat fresh fruit sometimes because of the acidity, which, when I started to eat gluten-free, fruit was my safe "go to" food. Not anymore! Do you think quinoa is ok? What about meats? I'm looking for any suggestions on what others have tried who may have had this sensitivity problem like myself. What about eggs? Also, I was wondering if maybe my birth control is safe? I called the company and they said nothing in the ingredients has gluten but is made in a factory where gluten is present. Do you think this is risky being a medication not a food?

I too am newly diagnosed by scope and blood work and my hormone replacement had gluten, I had my pharmacist check all my medication to see if they had gluten. I so understand how you are feeling! Typically the scope shows celiac disease in the small intestines and mine was up into my large intestines. The worse case they have ever seen. I went to a diatician and he gave me tons of information which has been helpful.

[Ms.frustrated]

I too am newly diagnosed by scope and blood work and my hormone replacement had gluten, I had my pharmacist check all my medication to see if they had gluten. I so understand how you are feeling! Typically the scope shows celiac disease in the small intestines and mine was up into my large intestines. The worse case they have ever seen. I went to a diatician and he gave me tons of information which has been helpful.

I too saw a dietician and although she was really nice and supportive, mostly what she told me were things I had already figured out on my own. I think I've learned more here than anywhere else so far. I'm not on any other medications so I was kinda hoping that it was the BCP. I feel I'm being really carefull with reading labels but obviously I'm missing something. I hope I can figure it out from all the great advise I've received on here. I'm afraid my findings with the scope would have been the same as yours as I've been dealing with this for so long. Now being off gluten or so I thought, I'm afraid to consume it again just so I can have the scope. But that's what the dr. wants me to do. I'll have a consult with him first to make sure he doesn't think there is anything else going on.

I'm glad you found some great information. We need all we can get!!