How can I safely figure out which gluten free foods upset my GI tract when people react to so many different foods?

[austin1]

Since my Celiac diagnosis 5 months ago my GI doc has now told me I also have IBS. I am now on a low FODMAP diet and trying to cut out anything that might be causing diarrhea, gas, and excessive mucus in my stool. It various from day to day but excessive gas is a daily issue, the excessive mucus is rather common and on my best days it's not present in my stool at all, and the diarrhea is rare but usually its not liquid but rather very soft and small pieces. My doctor basically told me there's nothing else I can really do but I can try taking Dicyclomine. I am not sure whether this is just unavoidable having been recently diagnosed as it seems stress also affects my digestion. Dicyclomine helps me get to sleep at night if I have any stomach discomfort, but I've been prescribed to take it nightly regardless. I have found when I am eating the right things I still don't have comfortable bowel movements, however taking CBD oil will surprisingly stabilize my GI tract very well. However, it seems like I accidentally eat the wrong thing and my body will function better than it would without the CBD, but still not digest food comfortably. Notably, the CBD oil seems to get rid of tension in my body though I'm not sure if that is a symptom of stress or IBS. Now I am looking around online and it seems so many gluten free foods that I thought were safe may be cross-reactive or just difficult to digest and I should cut them out. What can I safely eat that I will not react to and how do I safely cut out so many different foods? I am a college student of 20 years old and I'm really just at a point where I would go on a dirt based diet if I could feel 100% healthy as I am really struggling with school and am becoming more and more disconnected from my friends. I'm not sure if my uncomfortable bowel movements are due to eating too much of something bad, or just randomly on how I'm dealing with stress. Getting enough sleep definitely helps my GI tract, so I have adjusted my schedule appropriately. Also I pre-order gluten free foods at my university's dining hall and they are very knowledgeable about cross contamination. I have doubted the campus food many times as I really take extreme precautions at home to keep myself gluten free. I have also eaten at school when I was feeling well and I didn't have a gluten reaction. Of course there's also the possibility that the same meal I order that's prepared by the same person every time is sometimes getting cross-contaminated but at this point I really don't know. I was bringing a lunch to school for a few weeks before a blood test to make sure I wasn't getting contaminated at home and during that time I was feeling a bit better but not perfect, so now I think I might try that again. I just really don't know what to do at this point as I am not eating any gluten and have looked into every potential gluten risk and it doesn't seem to be a gluten reaction. Also my antibody levels tested at almost 0 so this IBS must be triggered by something else. I really appreciate any help, and thank you to anyone who took their time to read my post. 

[Ennis-TX]

Read about keeping a food diary Open Original Shared Link
 

For now stick to whole foods only, can take months to get over a exposure. Common issues are dairy as the vili that produce the enzymes to break it down are damaged so we get intolerance for it, soy, legumes, and spices are harsh also. Think of your intestines as carpet burned anything spicy, rough, or acidic will irrtate it right now. Everyone has different trigger foods and temporary intolerance or longer term food sensitivities go with this disease and many will go away as you heal.Open Original Shared Link

I would say if your having MAJOR gas issues to look at a Ketogenic Diet. The basis of removing the carbs/sugars means there is hardly anything to ferment and turn into gas. Digestive enzymes can help also.

[austin1]

20 hours ago, Ennis_TX said:

Read about keeping a food diary Open Original Shared Link
 

For now stick to whole foods only, can take months to get over a exposure. Common issues are dairy as the vili that produce the enzymes to break it down are damaged so we get intolerance for it, soy, legumes, and spices are harsh also. Think of your intestines as carpet burned anything spicy, rough, or acidic will irrtate it right now. Everyone has different trigger foods and temporary intolerance or longer term food sensitivities go with this disease and many will go away as you heal.Open Original Shared Link

I would say if your having MAJOR gas issues to look at a Ketogenic Diet. The basis of removing the carbs/sugars means there is hardly anything to ferment and turn into gas. Digestive enzymes can help also.

Is a Ketogenic Diet safe for me to just switch over? I'm not overweight and I do try to exercise regularly so I just worry about not having the necessary nutrients. Also what exactly do you mean by whole foods?

[Ennis-TX]

46 minutes ago, austin1 said:

Is a Ketogenic Diet safe for me to just switch over? I'm not overweight and I do try to exercise regularly so I just worry about not having the necessary nutrients. Also what exactly do you mean by whole foods?

A keto diet if done right is healthy and normal for humans, our ancestors would stop eating carbs, and fruit during winter months and eat more nuts and meats effectively a keto diet.  Look up stuff by Ketogenic Girl, Maria Emmerich, and ketoolgist etc. Make sure you get plenty of vitamin and eat different foods and if you can find a nutritionist to help you. Sometimes there is a "keto flu" as your body changes gears and stops burning carbs and changes to burning fats. I personally rotate between atkins and keto based to manage my AI issues, and it really helps with my blood sugar issues and other gut issues. If you find the atkins and keto are NOT for you then try a Paleo diet at least with sweet potatoes for your carbs they are not a nightshade like potatoes and many find them easier then grain based carbs for digestion.

Whole foods, as in single ingredient foods, avoid processed foods and packaged food items. Try making simple meals from single ingreident whole foods in your house, soups, stews, egg dishes and simple meats, meat dishes and steamed veggies etc.
This makes digestion easier, and finding problem foods easier to avoid while making label reading and navigating the diet much easier.
 

[cyclinglady]

@austin1

I am sorry that you are struggling with celiac disease while at school.  

Ennis  has made some great suggestions (food diary, digestive enzymes, etc.) However, consider just sticking to the gluten-free and FODMAPS diets for now.  Keto is pretty extreme and is often used for weight loss or diabetes management (and as a diabetic, I am low carb and higher fat).  Think of this as a science experiment.  If you start changing the variables, you and your doctor will not ever be sure of your hypothesis.  You can always try keto later. 

Was SIBO or Colitis ruled out by your GI?  As far as your antibodies being close to zero, which tests were given?  The celiac antibodies tests were developed to help diagnose celiac disease and not monitor the gluten free diet.  It is the only tool in the tool box for now, so everyone is uses it.  That said, it appears that the DGP test is better at monitoring than than the TTG.  

I can share that I had a recent repeat endoscopy and had healed villi (my GI went in deep and had a scope that could visually see the villi).    My celiac disease was in remission yet my GP IgA was still elevated in the 80’s.  So, while helpful, the test might not be accurate. Turns out I had Chronic Gastritis which is just a new autoimmune issue I must now deal with.  

You said you were confident that the university dining hall was handling your food well.  I am on a campus frequently.  At first our dining Hall seemed to be doing a great job of keeping celiacs safe.  They purchased many certified gluten-free items and had safe practices.  (Dessert was prepackaged certified gluten-free items found at the grocery store.)    It took time to get your meal which was prepared in a dedicated area with limited choices (but safe).  Then the university changed vendors.  For example, to save money and satisfy their other gluten-free students who do not have celiac disease, they made gluten-free cookies and cupcakes in house, using the same gunked up mixer and old pans shared with gluten containing ingredients.  Their gluten-free foods did not necessarily contain gluten but  cross contamination became an issue.  Who was advising them?  A student who was gluten free.  She did not have celiac disease.  When I pointed out the possibility of mixing spoons up in the chafing dishes, she became embarrassed.  Really, the head chef/manager was taking direction from a kid who was not even majoring in anything food related!  You bet I complained!  

So, recheck with your dining Hall.  Talk to the manager to insure your food is being prepared in a separate area prepared by employees (usually students) or avoid going there all together temporarily.    

Five months into the diet?  Most members report feeling well after a year.  Why?  All the collateral damage from celiac disease and learning the diet which has a very steep learning curve takes time.  It took me that long and I knew the diet well.  My hubby had been gluten-free 12 years before me!  What I learned is that I have my own unique set of other food intolerances. While he can eat gluten-free bread, I can not.  I have an intolerance to Xanthan Gum which is found in most commercially processed gluten-free grain foods.  That is why Ennis suggested the food diary.  

Hang in there!  

[healthysquirrel]

On 11/16/2018 at 4:50 PM, cyclinglady said:

@austin1

I am sorry that you are struggling with celiac disease while at school.  

Ennis  has made some great suggestions (food diary, digestive enzymes, etc.) However, consider just sticking to the gluten-free and FODMAPS diets for now.  Keto is pretty extreme and is often used for weight loss or diabetes management (and as a diabetic, I am low carb and higher fat).  Think of this as a science experiment.  If you start changing the variables, you and your doctor will not ever be sure of your hypothesis.  You can always try keto later. 

Was SIBO or Colitis ruled out by your GI?  As far as your antibodies being close to zero, which tests were given?  The celiac antibodies tests were developed to help diagnose celiac disease and not monitor the gluten free diet.  It is the only tool in the tool box for now, so everyone is uses it.  That said, it appears that the DGP test is better at monitoring than than the TTG.  

I can share that I had a recent repeat endoscopy and had healed villi (my GI went in deep and had a scope that could visually see the villi).    My celiac disease was in remission yet my GP IgA was still elevated in the 80’s.  So, while helpful, the test might not be accurate. Turns out I had Chronic Gastritis which is just a new autoimmune issue I must now deal with.  

You said you were confident that the university dining hall was handling your food well.  I am on a campus frequently.  At first our dining Hall seemed to be doing a great job of keeping celiacs safe.  They purchased many certified gluten-free items and had safe practices.  (Dessert was prepackaged certified gluten-free items found at the grocery store.)    It took time to get your meal which was prepared in a dedicated area with limited choices (but safe).  Then the university changed vendors.  For example, to save money and satisfy their other gluten-free students who do not have celiac disease, they made gluten-free cookies and cupcakes in house, using the same gunked up mixer and old pans shared with gluten containing ingredients.  Their gluten-free foods did not necessarily contain gluten but  cross contamination became an issue.  Who was advising them?  A student who was gluten free.  She did not have celiac disease.  When I pointed out the possibility of mixing spoons up in the chafing dishes, she became embarrassed.  Really, the head chef/manager was taking direction from a kid who was not even majoring in anything food related!  You bet I complained!  

So, recheck with your dining Hall.  Talk to the manager to insure your food is being prepared in a separate area prepared by employees (usually students) or avoid going there all together temporarily.    

Five months into the diet?  Most members report feeling well after a year.  Why?  All the collateral damage from celiac disease and learning the diet which has a very steep learning curve takes time.  It took me that long and I knew the diet well.  My hubby had been gluten-free 12 years before me!  What I learned is that I have my own unique set of other food intolerances. While he can eat gluten-free bread, I can not.  I have an intolerance to Xanthan Gum which is found in most commercially processed gluten-free grain foods.  That is why Ennis suggested the food diary.  

Hang in there!  

 

On 11/15/2018 at 1:39 AM, austin1 said:

Since my Celiac diagnosis 5 months ago my GI doc has now told me I also have IBS. I am now on a low FODMAP diet and trying to cut out anything that might be causing diarrhea, gas, and excessive mucus in my stool. It various from day to day but excessive gas is a daily issue, the excessive mucus is rather common and on my best days it's not present in my stool at all, and the diarrhea is rare but usually its not liquid but rather very soft and small pieces. My doctor basically told me there's nothing else I can really do but I can try taking Dicyclomine. I am not sure whether this is just unavoidable having been recently diagnosed as it seems stress also affects my digestion. Dicyclomine helps me get to sleep at night if I have any stomach discomfort, but I've been prescribed to take it nightly regardless. I have found when I am eating the right things I still don't have comfortable bowel movements, however taking CBD oil will surprisingly stabilize my GI tract very well. However, it seems like I accidentally eat the wrong thing and my body will function better than it would without the CBD, but still not digest food comfortably. Notably, the CBD oil seems to get rid of tension in my body though I'm not sure if that is a symptom of stress or IBS. Now I am looking around online and it seems so many gluten free foods that I thought were safe may be cross-reactive or just difficult to digest and I should cut them out. What can I safely eat that I will not react to and how do I safely cut out so many different foods? I am a college student of 20 years old and I'm really just at a point where I would go on a dirt based diet if I could feel 100% healthy as I am really struggling with school and am becoming more and more disconnected from my friends. I'm not sure if my uncomfortable bowel movements are due to eating too much of something bad, or just randomly on how I'm dealing with stress. Getting enough sleep definitely helps my GI tract, so I have adjusted my schedule appropriately. Also I pre-order gluten free foods at my university's dining hall and they are very knowledgeable about cross contamination. I have doubted the campus food many times as I really take extreme precautions at home to keep myself gluten free. I have also eaten at school when I was feeling well and I didn't have a gluten reaction. Of course there's also the possibility that the same meal I order that's prepared by the same person every time is sometimes getting cross-contaminated but at this point I really don't know. I was bringing a lunch to school for a few weeks before a blood test to make sure I wasn't getting contaminated at home and during that time I was feeling a bit better but not perfect, so now I think I might try that again. I just really don't know what to do at this point as I am not eating any gluten and have looked into every potential gluten risk and it doesn't seem to be a gluten reaction. Also my antibody levels tested at almost 0 so this IBS must be triggered by something else. I really appreciate any help, and thank you to anyone who took their time to read my post. 

Studying while newly diagnosed is a challenge because at the beginning you are also studying your own disease. It is so much to learn, so please ask questions here and we'll answer. I was diagnosed weeks before my end of the year exam in anatomy and physiology. I agree with you, bring your own non processed food. Simple low fodmap for now and then add things back later. I noticed that certain easy-to-digest juices that I made myself helped get me through the day and stay focused. (only if you can digest that though, mine were mostly made of veggies). All my best! 

[Whitepaw]

I recently read an article that said it can take 18 to 24 months for a Celiac gut to heal. I'm much better, but still healing, from some non gluten dietary indiscretions (dairy, sugar, peanuts, chocolate) in May 2017. 

We are all different,  so what works for one may not work for the next. The diary that Ennis mentioned is the best starting place. It will help you (or your Dr. or dietician) identify foods or food types that are problematic. 

FODMAPs were also mentioned.  Recently,  I've read articles that implicate fructans as an issue for those who don't get relief from a gluten free diet alone.  One good resource for addressing multiple dietary restrictions is The Flexible FODMAP Diet Cookbook by Laura Manning RD and Karen Frazier.  It provides low FODMAP recipes and how to modify each one for IBS-C, IBS-D, or acid reflux.  Kate Scarlata's website has lists of food and specific products that are low FODMAP.  

I suspect that the cafeteria is an issue, so finding foods you tolerate and can carry with you, and choosing select cafeteria foods (not prepared by the staff),  may be your best bet. This is easier than it sounds, and you can do it without pricey packaged products that may contain other suspect ingredients.  If you tolerate bread, try Udi's White Sandwich Bread or Trader Joes's white bread or plain bagels. Udi's is on the low FODMAP list, and Trader Joe's has ingredients that appear to be compliant with low FODMAP (only some products have been formally tested for FODMAPs). 

Another thing to watch are additives. Some people don't tolerate guar gum, xanthan gum, psyllium,  isolates, etc.  All the more reason to eat real vs. packaged foods. 

This can be frustrating,  as there is nothing more miserable than GI issues and not being able to eat. Once you figure out what you can eat, it gets easier. However,  it can take quite a while to reach the point where you start adding a greater variety of foods.

In my case, I kept a diary for 4 or 5 days, then converted that into lists of well-tolerated, sometimes tolerated, don't tolerate. I showed the lists to my Dr., and it took him just a few seconds to identify the type of diet I needed (low FODMAP,  modified for acid reflux,  nondairy).  I further modified that to trace corn content, and did not eat foods that contained certain ingredients/additives that also posed problems. 

You will get there, it just takes some good sleuthing, a good Dr to help guide you (switch if you need to), and patience. 

 

 

[notme]

food journal, as others have suggested, is the way to go.  also, i had a problem with eating something one day and it would digest well, then eat the same exact thing the next day and it would be terrible.  i started to rotate my meals ( not eating the same thing(s) as the day before and i have been able to add back many many foods that i could not digest for some unknown reason.  went out of my mind looking for an answer, saw a bunch of doctors suspecting histamine intolerance <which it probably is but i'll never bring it up to another medical professional as long as i live)  and something called mcas (but if i have that, it's very mild, and i'm able to stabilize my system with a tiny dose of xanax per day, zyrtek 1x per day, and zantac low dose 2x per day)  i think the cbd is a good gut 'relaxer' so, yeah.  you also must have patience:  i've been gluten-free for 8+ years (i keep thinking 10 lolz) but i also went undiagnosed for 25 years, so i am feeling sooooo much better, but it took a long time.  you are young, hopefully you will heal faster!  i also take the same stuff:  dicyclomine.  but not every day, only when i get a spasm <used to really freak me out, went to the e.r., etc, doctor explained to me that it can spasm for a long time and your body will try to make soft stool to get things moving.  so, the dicyclomine helps i guess to relax the spasm.  i  find that once things start moving, i have much less gas, etc, but wowzers, there's been a couple of times i was like, waiting for an alien to pop out of my guts lolz it almost feels like a hard lump.  keep being vigilant and stay on your diet.  you'll get better at it, but it sure sounds like you're having a spasm, especially since the dicyclomine works on it.  good luck