5 Years Gluten Free. Still Am Suffering. What Could It Be?

[Pat Tato]

Hi folks, I have used this website for all sorts of great knowledge, and finally made my account! 

 

So, I am pretty strict with this. I don't go out to eat, I cook my own food, and for the most part its healthy. I'll go through periods of feeling okay, normal bowels, and then I'll go through 1-8+ week periods of constant diarrhea 1-5 times a day. I can't figure out what is causing this. When I was at my uncles house last weekend, I ate great food: Risotto, Kale, Chicken, Flank Steak, Split pea/Pork soup, Potatoes, Cashews, Almonds, Pumpkin seeds, gluten-free Cookies, and gluten-free Oreos. However the next day after eating these foods, I felt sick, exhausted, joint pain, stomach pain, awful diarrhea. Their whole family eats gluten free so I don't understand what could have caused this. 3 days later and I feel like I have almost recovered, except the diarrhea is still terrible. Because I go through phases of good bowels and phases of diarrhea, I feel like there's something I'm doing wrong, but this weekend really has confused me even more. To help you guys out, I'll list the foods that I normally eat throughout the day:

 

Cashews, almonds, stews (pork or chicken or beef, potatoes, carrots, onions, and chicken broth), turkey or ham sandwich plain (boar's head brand), brown rice pasta, brown rice, lentil soup, grilled chicken,  banana and peanut butter, rasberry, blueberry, blackberry smoothie, salad with vinegar and olive oil, avocados, apple sauce, coconut ice cream, salmon, carrots, gluten-free cookies. 

 

Does anyone spot anything that is causing this diarrhea?

Let's say that maybe I'm intolerant to more than gluten, how can I get tested for other intolerances?

[kareng]

Were you diagnosed as allergic to wheat?  Celiac?  There really isn't an allergy to gluten but sometimes we say that for Celiac to make it easier for someone, like  a waiter, to understand.  

 

There are people on here who can explain food allergies better.  But basically, an allergy isn't diarrhea, etc.

 

 To find out if you are intolerant, not allergic,  to another food, you may have to do an elimination diet.  Find a few safe foods, then add a new food in for a week and see how you do.

[Pat Tato]

Sorry to confuse. I was diagnosed with Celiac, so I have an intolerance to it. I feel like this type of question has already been asked before. If someone could lead me to a similar post that would be great. I don't wanna waste anyone's time here. An elimination diet sounds tough. So is there no way I can take a stool test for other foods like Corn, Soy, ect?

[mamaw]

there are  several places  to  get  tested for foods allergies....Not sure  if all insurances would  pay for it...

have  you thought  about  the roughage  you consumed. some of the  healthy foods  can cause  problems  for  us  sensitive  people.  You had  lots  of  nuts, split  peas, kale, lentils..... that  would  be  way to much  for  me....

Other  things to  consider  was  the  chicken  organic?  I  can only  eat  organic  chicken  &  grass fed  beef....

Other  ideas  pet food  & pets  licking  you? I know  off the  wall but it  does happen.. CC  happens  so easy ..  chicken broth?

one  almost  needs to be  Sherlock Holmes..

Did  you know  that  some  people  no matter  how  strict   ,  their  intestinal  tract  never  heals...

And for the  record  asking  a question is NEVER a waste of  time.. This  is how we  educate  ourselves....

Many of us  have  had  to cut  out  normally  healthy  foods  because  we  have issues  with them ie: nightshades,  soy,  corn, rice. GMO foods....hth

[kareng]

Stool tests don't test for things like celiac or food intolerances. There really are no recognized ests for food intolerances.

Open Original Shared Link

[GFinDC]

Some people have problems with coconut.  Actually, you can become sensitized to any food.  There are a few tests for intolerances, but not many.  It is better to do an elimination diet, since you can't get a test for all those foods anyway.  You didn't mention any tea or coffee or soda, so if you aren't drinking those it is not a problem.

 

How about vitamins or medicines?  Any problems there?

[Pat Tato]

Some people have problems with coconut.  Actually, you can become sensitized to any food.  There are a few tests for intolerances, but not many.  It is better to do an elimination diet, since you can't get a test for all those foods anyway.  You didn't mention any tea or coffee or soda, so if you aren't drinking those it is not a problem.

 

How about vitamins or medicines?  Any problems there?

I know its not coconut. And yeah I don't drink tea, coffee or soda. The only pills I take are probiotics. Can probiotics be bad? 

[cyclinglady]

Probiotics bad? No, but you may be intolerant to them if they are, say, for example, milk based and you can not tolerate milk.

What are the foods you can not live without? Start from that list. "What? I could never give up nuts or avocados! They are so heathy for you and I love them!"

See what I mean?

It is not always the standard intolerances. One of my crazy intolerances is garlic and the whole garlic family. Face breaks out, tummy issues, mouth gets tingly...... Later body aches, grumpy, tired.......

[NoGlutenCooties]

Do you typically avoid processed food?  Some folks have issues with the additives they put in gluten-free food to take the place of the gluten... like xanthum gum and guar gum, etc.  Read the ingredient list on the gluten-free cookies... some of them are pretty scarey.

[GFinDC]

I know its not coconut. And yeah I don't drink tea, coffee or soda. The only pills I take are probiotics. Can probiotics be bad? 

 

Some pro-biotics have dairy in them.  As you can see, there are a lot of suggestions for what could be the problem, because the reality is any food can be a problem.  That's why you need to consider an elimination diet.  If you want to try some simpler things first, try eliminating all processed foods for a month.  If that helps, then you know one or more of the processed foods was a problem.

[HavaneseMom]

I noticed that you mentioned that you are eating Boar's Head turkey and ham. Are you getting that sliced from the deli counter?

 

The reason I ask is because last time I ate some Boar's Head meat sliced from the deli counter I felt very sick afterward. I looked in to it, and found that while their meat is gluten free, sometimes the slicer may have been used on another deli item that contained gluten earlier in that day. Some of the lesser brands that the deli offers could contain gluten, and if they were sliced on the same slicer, your meat could be cross contaminated. It was recommended in the post I read that we place a order with the deli to have them slice our meat first thing in the morning when everything is clean and sanitized.

 

I hope you will feel better soon.

[dilettantesteph]

I agree with Kareng about the elimintion diet.  Start with your safe foods symptom free.  Then try adding things one at a time, one per week and monitor your symptoms.  That is the way to figure out what you can eat, and what you can't.  It is slow but effective.  It is what I've done to find a safe diet.  In my case, just because another celiac can eat something doesn't mean that I can.  Some are sensitive to lower levels of gluten than others, and some have other food intolerances.

[cahill]

 

 

Does anyone spot anything that is causing this diarrhea?

Let's say that maybe I'm intolerant to more than gluten, how can I get tested for other intolerances?

For me the gluten free cookies would be an issue ,, but I am super sensitive and have multiple  intolerances .

Possible cross contamination at your uncles house  ( is it a totally gluten free house ?)

 

Doing a strict elimination diet is the best way to rule out other possible intolerance. If you are not able to do a strict elimination diet  just eliminating the other biggest possible offenders ( after gluten )   such as dairy ,soy, corn,nightshades ( in your case potatoes ) , eggs and fish then slowly add them back to judge your reaction may be something to consider ..

[Pat Tato]

Update

 

The diarreha-constipation is still in full effect, I don't know whats going on.

I started my elimination diet two days ago. I now avoid all meats, dairy (even though this was always avoided), soy, corn, potatoes, and eggs. However I have a bunch of salmon in my freezer that I don't want to waste, so I'm eating that.

 

Yesterday's diet consisted of: Cachews, pumpkin seeds, almonds, dried edamame, mangoes, pears, bananas, peanutbutter and jelly sandwiches, coconut chocolate icecream (dairy, soy, egg free), salads with olive oil and vinegar, avocadoes, pomegranite juice, brown rice, brussel sprouts, spinach, and salmon (cooked in coconut oil).

 

Today I had one of my worst episodes (burning diarreha-constipation), just all around fun stuff. So, maybe it is the salmon that is causing this? Or GFinDC, maybe your right in saying that its coconut? Or it's...

 

One other really important thing I forgot to tell you about!: 3 and a half months ago I got diagnosed with chronic prostatitis and possible internal cystitis. In december I was on antibiotics for 6 weeks. During this period, the symtoms slightly went away, and my craps were great. When I stopped the antibiotics, the symtoms came back slightly, and I went on a two week period of some Grade - A probiotics (had a gazillion good bacteria, was free of all allergies too). Since then, I've been able to keep the symtoms diminished. I want to say that maybe this is what is causing the diarreha, but in January, I had a period of good craps, so maybe this is not the case. All these variables are overheleming. I'm too young for this crap.

 

I live with my two roomates that are not gluten free and live off of ramen, poptarts, and hamburgers. The counters are dirty most of the time (I'm the only one who cleans them ), the oven rack is contaminated (I toast my bread on top of a napkin inside it lol). I am always careful never to let my food touch these areas. However, when I leave my pan in the sink, sometimes they pour their ramen on it. I make sure to scrub them well before each use, but is it possible for there to be contamintation?

 

Thank you everyone for helping me out through my struggle! Together we will figure this out!

[cahill]

Update

 

The diarreha-constipation is still in full effect, I don't know whats going on.

I started my elimination diet two days ago. I now avoid all meats, dairy (even though this was always avoided), soy, corn, potatoes, and eggs. However I have a bunch of salmon in my freezer that I don't want to waste, so I'm eating that.

 

Yesterday's diet consisted of: Cachews, pumpkin seeds, almonds, dried edamame, mangoes, pears, bananas, peanutbutter and jelly sandwiches, coconut chocolate icecream (dairy, soy, egg free), salads with olive oil and vinegar, avocadoes, pomegranite juice, brown rice, brussel sprouts, spinach, and salmon (cooked in coconut oil).

 

Today I had one of my worst episodes (burning diarreha-constipation), just all around fun stuff. So, maybe it is the salmon that is causing this? Or GFinDC, maybe your right in saying that its coconut? Or it's...

 

One other really important thing I forgot to tell you about!: 3 and a half months ago I got diagnosed with chronic prostatitis and possible internal cystitis. In december I was on antibiotics for 6 weeks. During this period, the symtoms slightly went away, and my craps were great. When I stopped the antibiotics, the symtoms came back slightly, and I went on a two week period of some Grade - A probiotics (had a gazillion good bacteria, was free of all allergies too). Since then, I've been able to keep the symtoms diminished. I want to say that maybe this is what is causing the diarreha, but in January, I had a period of good craps, so maybe this is not the case. All these variables are overheleming. I'm too young for this crap.

 

I live with my two roomates that are not gluten free and live off of ramen, poptarts, and hamburgers. The counters are dirty most of the time (I'm the only one who cleans them ), the oven rack is contaminated (I toast my bread on top of a napkin inside it lol). I am always careful never to let my food touch these areas. However, when I leave my pan in the sink, sometimes they pour their ramen on it. I make sure to scrub them well before each use, but is it possible for there to be contamintation?

 

Thank you everyone for helping me out through my struggle! Together we will figure this out!

For the peanut butter and jelly sandwiches what bread are you using?? Most gluten free breads will have potato starch .

 

Edamane is soy

[GottaSki]

I wouldn't blame the salmon quite yet.  The things you have removed makes your diet limited, yet the wide variety of things you are eating will make it difficult to pinpoint food intolerance.  

 

For instance if your issue is legumes, not just soy....both the peanut butter and edamame would be an issue.

 

If nuts and seeds are the issue...If grains are the issue....I could go on.

 

Processed food of any sort (even "healthy" ice cream) doesn't belong in the initial weeks of an elimination diet.

 

Is there a reason you removed meat?

 

I know how tough it is to figure other food intolerance out....I spent over two years trying to remove one food or group at a time until I finally removed everything except meat, veggies and fruit.  Turns out I was intolerant of nearly all high lectin foods, plus high histamine foods....

 

 I am one of the worst case scenarios...most folks that complete a true elimination diet end up with a nice variety of foods.  In my opinion it is well worth the effort to complete a strict elimination diet, rather than a limitation diet that is very frustrating yet provides no firm answers.

 

Since you do have periods without issue, it may simply be cross contamination is the issue or some other gluten is sneaking in.....are your nuts and seeds processed on shared equipment?  

 

Have you had a recent celiac antibody panel?  If not, that may be a good place to start.  If your tTG and DGP numbers are all good, then a full elimination diet is the way to go.

 

Hang in there

[Pat Tato]

Heh, I feel dumb. Okay so no more edamame. And now that I think about it, I'm fairly sure my bread has potatoe-starch (Its Rudi's). But what I don't understand is that I've been able to eat these foods without having consequences. I feel like as I continue to eat more and more healthy, my body's tolerance to other food continues to degrade.

 

Thank you Gottaski for your imput. It looks like I need to fix my elimination diet.

 

I need to remove the ice cream. Should I remove the bread too? And maybe peanut butter? Is there a good guide that someone used to make their elimination diet?

[GottaSki]

It's tough because there are so many variations of "elimination" diets out there....I went with the strictest combo geared towards autoimmune disease which eliminated all high lectin groups:

 

Dairy, Grains, Legumes, Nightshades, Nuts, Seeds and Eggs.

 

I ate meat, fish, veggies and fruit, with the exception of nightshade veggies and fruits I already had clear issues with.

 

Lots of smoothies and stirfrys.

 

That's why I asked if there was a reason to remove meat....If so, this plan would not work for you.

 

Perhaps read a bit about lectins as you decide the next best step for you.  I'm on a mobile device so I can't provide links to helpful info today.

[NoGlutenCooties]

Regarding your cross-contamination question...  It is possible that you are getting cross-contaminated in a shared kitchen if you aren't carefull.  However, I wouldn't fret too much about Ramen being poured in a pan.  As long as it isn't porous, like caste-iron.  Pans clean thoroughly and don't hang onto gluten - so as long as you're cleaning them well you're fine there.  You may want to wash your silverware before you use it, as flour dust and crumbs can settle into the drawers and contaminate your silverware.

[GFinDC]

Since you are in a shared kitchen, you have to have separate butter, mayo, peanut butter etc from the other people.  Also a separate toaster.

 

You could start your elimination diet with beef (or chicken), peas, mushrooms (wash them), sweet potatoes, and parsley.  That will probably be ok, although there is no guarantee you won't have reactions to one of those foods.  You will need to stick with that for a week or two and see how it goes.

[Gemini]

What no one has mentioned yet is that you may have another underlying condition, one of which is microscopic colitis, which is very common with Celiac Disease.  I know pople with this condition.  Your large intestine becomes inflammed, on a microscopic level, but only a doctor can diagnose this.  It causes unrelenting diarrhea, which you are having a problem with.  I would seriously go to a GI doctor, one that you trust, and not go off on a tangent looking at food as the problem.  Even with othe food intolerances, diarrhea should not be constant.  That is a red flag for colitis and you should make sure that is not the problem because you'll be cutting everything out of your diet and the diarrhea will not go away if you have this.  Have the Celiac panel rerun to see if you are ingesting gluten in your diet but I think you should look at other underlying conditions also.  Having diarrhea constantly can become serious, as you will become dehydrated.

 

Good luck and I hope you feel better soon!

[Pat Tato]

Thank you NoGlutenCookies, GFinDC, and Gemini. I will follow your advice Gemini and see if I might have microscopic colitis. After looking up this condition, it seems like the only known treatments for this is anti-diarreha medicine, which I don't want to become dependent on. If this is the case, whats the use of even getting a diagnosis for this problem?

 

GFinDC, how long do you think I should start noticing the effects of a chicken, pea, mushroom, sweet potatoe, and parsley diet?

 

I think I might have found a cause to my problems. Last night I was starving, so I ate a rice peanut-choco bar (ingredient list found here) and immediately my mouth started to itch. I think I'm allergic to peanuts? And if I were to be allergic to peanuts, would that mean I also have an intolerance to peanuts too?

[Pat Tato]

And GFinDC, If I go on this strict diet, would I be allowed to cook to the chicken or beef with organic conola oil? Could I add things like brown sugar to the sweet potatoes? or should it be to 100% pure?

 

And as I do this, should I start taking suppliments (MSM, Magnisium, Vitamin D)? When I was diagnosed with celiac, my GI told me to take magnesium, which I did, but only for a year or so.