Never Had Gi Symptoms Before gluten-free Diet But Now . . .

[MattandGut]

I was diagnosed with celiac disease six weeks ago following an endoscopy/biopsy to confirm a positive blood test. Prior to being diagnosed I had never had any GI symptoms whatsoever. My wife used to tease me about how we could set a clock by the time of my daily bowel movements. I had a healthy appetite and was rarely among those who caught stomach bugs when they went around. I was only tested for celiac disease after dozens of other tests failed to turn up any explanation for my persistent anemia, low B12, peripheral neuropathy, concentration problems, and severe migratory joint pain. Even the doctor who ordered the blood test said she was just grasping at straws.

Though surprised by the blood test results, I was desperate for some relief and thoroughly educated myself about the gluten free diet so by the time the biopsy was done, I was prepared to give up gluten, which I did that same day. My wife also gave up gluten, we cleared all gluten-containing foods, soaps, chapstick, etc out of our house, cleaned out the fridge, and bought new cutting boards and wooden spoons. Since then, I have not eaten a single thing without being able to confirm that it was completely gluten free. I have also kept a log of everything I have eaten.

I was prepared for it to take a while for the diet to have a positive effect. I was not prepared to have numerous and severe new symptoms appear once I gave up gluten. For the past month, I have been nauseous, had no appetite, alternated between extremely severe diarrhea (to the point of being incontinent at the worst of it) and constipation, and had frequent (2-4 x week) bouts of severe abdominal pain that last 6-12 hours before easing up. The abdominal pain is the worst part and--at its worst--is comparable to the level of pain I felt when I broke my arm a few years ago, I've lost 15 lbs in the last 4 weeks.

If I had experienced GI symptoms all along, I would understand why they aren't better yet. But why would eliminating gluten cause such severe new symptoms? Is this something others with celiac disease have experienced? Is it possible that the blood test and biopsy were false positives and the damage to my intestines was caused by something else (that gluten was helping to keep in check, maybe?)

Any comments or thoughts would be appreciated.

[mushroom]

Hello, and welcome to the board!

 

That is a bit of a dilemma, isn't it?  I suppose the first place to start is to find out what you are eating and see if that gives any clues.  We know you are not eating gluten, or at least not intentionally, but what have you replaced gluten with?  If you've been reading around the board a bit, you will have seen our recommendation that you not go out and buy gluten-free replacements for all your processed gluten-filled foods, but rather stick to the foods that are naturally gluten free, whole foods like meat, fish, vegetables, eggs, fruit, nuts, seeds, rice, as much as possible.  We also recommend that you avoid at least lactose, if not all dairy, to start with, even though you have not been having the GI symptoms previously.  If your endoscopy was positive you have damage to the small intestine and may not be able to digest lactose until it heals.  A gut full of undigested lactose can kick up bob-se-die. 

 

You will probably want some bread of some kind and most seem to like Udi's or Rudi's, some Tinkyada pasta which is made from rice flour, and maybe a bag of Pamela's Baking Mix to start with, for pancakes, waffles, etc.  Apart from that it is best to avoid all the substitutes as they contain a lot of grains your body will not be familiar with particularly, and it will already be finding digestion a challenge with villous damage.  I am thinking of things like quinoa, millet, amaranth, possibly even eliminate corn for a while to see if it makes a difference (but not at the same time as you eliminate lactose).  You can find lots of different milks, like hemp, almond, soy if you must , coconut and rice (but avoid Rice Dream to start with because many celiacs react to it.)  You can even find coconut and hemp ice creams for a treat.  For the most part, except the bread) try not to eat anything that has more than three or four ingredients.

 

Anyway, that is the basic eating plan until you can figure out what is going on with your gut.  You might also try some probiotics to repopulate your gut with good flora, and some digestive enzymes with meals to supplement what the pancreas is putting out (oftentimes not enough). 

 

Let us know what you are eating and anything that appears to be a trigger.  To help you out on this you could try keeping a food and symptom diary.of what you ate when and what reaction you had when to see if a pattern emerges.

 

Welcome to the club! and best wishes for a speed resolution of your symptoms.  And do tell us what you have been eating

[Takala]

Is it possible that the blood test and biopsy were false positives and the damage to my intestines was caused by something else (that gluten was helping to keep in check, maybe?)

 

Nope. Not with the "persistent anemia, low B12, peripheral neuropathy, concentration problems, and severe migratory joint pain" -  you are at least 99.99% probable to have damage to the lining of your small intestines. 

 

What happens is, that over time, people with real "gluten problems" who go off of gluten tend to become more sensitive to exposure to it.  This seems to have happened unusually quickly to you.  I know you believe that you are gluten free at this point in time, and are doing all you can to be, but, I highly suspect you are not as gluten free as you think you are, everybody does this, in the beginning, and those with the "neuro" issues tend to be the highly sensitive ones.  Sorry. 

 

Can you have an additional problem going on, besides the accidental cross contamination ?  Yes, so you should probably re contact your doctor and talk about this, to rule out other things.   But, it is very likely that your gut simply is not healed yet,  and then it's getting aggravated by something new in your gluten free diet.   I didn't have this happen until several years in, when I tried broadening my diet to include regular gluten free commercial foods and baked goods, and I kept hitting a wall.  (I was grain free, at first, because I am not good, at all, on a high carb/high starch diet, and I used a lot of nut meals for "flour.")  And it took me quite a while to figure out that, for reasons unknown, I am sensitive to a few of the really common ingredients used in these sorts of goods, like flax.   I had to break it down and try out ingredients one by one in my own baking....  it's a good thing I can bake and like experimenting, but I still kept missing this until I tried some flax oil, because it was "supposed" to be so good for you, and whammo, really got hit.       I haven't found another "flax reactor" yet, but I use it as an example of some the stranger things that can happen.   I also had some problems with soy flour even though I have eaten lots of soy in products like tofu, in the past.  I can do pure soy sauce without wheat, if I want, but forget it about soy flour.  Millet flour is another one.  All three together, soy, millet, and flax, add in a little gluten free oat cross contamination, and I'm done for.  And I didn't expect the oat problem, either, because I used to eat oats way before I gave up gluten, and this had to be suggested to me to try to change brands of what flours I used, to avoid oat c'c -  THAT was a huge, final piece of the puzzle of why I kept getting these random reactions.  

 

The last time I had a problem, I had eaten some gluten free, GMO free, organic corn chips, which I noticed had undergone a slight labeling change and they now use one of three different kinds of oils.  This time I got the return of the skin problems, and actually had a patch of a rash break out.  Then the rash tries to get inflamed. Not good.   Stopped the chips,   kept carefully cleaning the area, it goes away.   So either the chips have an ever so slight c'c problem, unlikely, because I've had other bags of them, and didn't react, or I'm sensitive to one of those oils.  And I keep reading in the news that adulterated olive oil is a big problem in Europe, and it's getting worse, so watch out for these sorts of problems here with imported stuff, because if these oil makers are messing up olive oil, they are likely also messing up other types of oils sometimes in terms of either cross contamination or purity of ingredients.  Unless some testing authority is doing DNA analysis, who knows what really could be in a batch of blended oils.   

 

My other reaction last year was to some nuts from where I used to buy them all the time, because now the label says "processed in a facility with.... " and I didn't take it seriously, because I had used that store, for so long.   I was so bummed.  I already cannot use almond flours which are made in oat milling facilities, and I have made my own almond flour meal for a decade.   My dear spouse actually went reconoitering recently to an almond farm where they husk and package their own almonds, and asked them if they had dedicated packaging lines or not, and they didn't, they explained they sent some of the hulled almonds out to be candy coated, then re packaged them for retail sale, there back in the facility.     I really do appreciate suppliers and manufacturers who will disclose information like this, even if the end result is that some of us very sensitive ones are not going to be doing so well with their product sometimes.  I hope, in the future, some more almond and nut growers can find a work- around to the wheat/gluten cross contamination problem for plain almonds, I'm using ones now that are "processed in a facility with other tree nuts and soy..." and so far, knock on wood, can tolerate them.

 

Even though you may have a different "surprise" sensitivity, I am writing this to show that you still may have to play "Mystery Cross Contamination Theater" in your kitchen some more, before you get this all figured out.   I went back to a very elemental diet again and again when I'd have one of these reactions, just sticking to a few things I knew I was safe with, fruit, vegetable, pure olive oil, meats, eggs, safe nuts, then reintroducing foods slowly as I recovered, while I tried to figure out "what was it, this time" after trying a different brand of something.  The two biggest culprits for problems seem to be dairy, especially dairy with lactose, and soy, so you may want to stop eating that first, and see what happens.  You may be able to get some dairy back after you are healed.  Also, if you are trying oats, ignore what some of these RD's say, and hold off on trying gluten free oats until you have your gut symptoms very much under control.  With gluten free flours and baked goods, I would be, since you're still having such a bad time, very, very cautious, and use those, if at all, with as few ingredients as possible -  look into doing your own gluten free microwave baking in small ceramic cups, with something like a single ingredient such as rice flour, or a safe nut flour, egg, and a safe form of fat, such as pure olive or coconut oil.   It's not that some of these commercial items aren't gluten free enough, it's that you're still hyper-sensitive to having auto immune flares right now, which is what a celiac reaction is.  You might want to try the Chebe tapioca mixes, you don't have to mix them up with dairy, you can sub other ingredients if you have to, or use half Chebe mix and half one other kind of gluten free flour, and they are grain free.  You can also do searches for gluten free grain free recipes on the internet, or do searches for Paleo diet websites, to get their recipe links. 

[MattandGut]

Since I've been keeping a log, I can certainly report on what I'm eating. The focus has been on whole foods with the only processed foods being rice noodles that were certified gluten-free, Udi's white bread, some meats (turkey bacon, e.g.), Jelly Belly brand jelly bans (for a treat), and things I've made myself using Bob's Red Mill baking mix. I have also had Silk brand soy milk 4 times but drinking it has not seemed to correlate with any GI symptoms. Twice in the last month I have eaten homemade ice cream (with real cream and milk) but neither time resulted in either a worsening or an improvement in the GI symptoms, as far as I can tell. Al vegetables have either been fresh or frozen. All beans have been prepared from dried (not canned).

Here are typical meals for me:

Breakfast

1. 2 scrambled eggs, 2 slices lean gluten-free turkey bacon, cup of fresh cut fruit

2. 3 gluten-free pancakes from Bob's Red Mill mix, pure maple syrup, fresh cut fruit

3. Cinnamon toast from slice of Udi's bread, turkey sausage, fresh cut fruit

Lunch- on weekdays, I take leftovers from dinner the night before to work, usually with an orange and a Baggie of carrots or celery for a snack. I keep peanut butter (gluten-free) in my office to go with the celery/carrots. On weekends, I either eat leftovers or make one of the meals I'd make for dinner during the week.

Dinner

1. Slices of Pork tenderloin that has been cooked with gluten-free soy sauce and fresh rosemary, potatoes cut up and baked with olive oil, steamed green beans

2. Lean chicken sautéed with broccoli and zucchini, tossed in a satay sauce (peanut butter, gluten-free soy sauce, gluten-free teriyaki, fresh ginger and fresh garlic) served over Asian style gluten-free rice noodles

3. Ground turkey sautéed with gluten-free taco seasonings, corn, and black beans, served over cut lettuce with diced tomatoes on top.

4. Chicken breast rubbed with olive oil and baked with a sweet potato and Brussels sprouts ( sprouts blanched then sautéed in olive oil with a bit of garlic)

5. Turkey burger with lettuce, tomato (no bun- have jaw problems so can't open mouth wide enough for bun even if I wanted one, sweet potato "fries" (cut up, tossed in olive oil, baked in oven)

6. Chicken and rice casserole made with chicken breast, homemade chicken stock, gluten-free brown rice, and green beans or peas

7. Lean cut sirloin steak, grilled, with baked potato (butter, cheddar cheese, crumbled bacon leftover from breakfast), grilled zucchini

Dessert/treats

1. Homemade clementine cake (from oranges, ground almonds, eggs, sugar, and baking soda)

2. Leftover gluten-free pancake with cut berries

3. Cookies made with Bob's Red Mill mix

4. Jelly Belly brand jelly beans

5. Homemade ice cream

6. Soy milk with chocolate syrup

7. Whole fruit popsicles

I have not eaten out at all.

There have also been a lot of missed meals and partially eaten meals due to the nausea. I know there are some foods I've eaten that could be causing problems (occasional dairy, soy, corn, etc) but I haven't correlated any of them with worsened symptoms.

Even if one or more of the foods is the culprit, why would these symptoms just appear now, after giving up gluten? If my villi don't produce enough lactase due to being damaged from gluten, shouldn't digesting lactose ave been a problem back when I was eating gluten?

I do have an appt with a dietician at my GI's office next week. I am just so tired of how sick I've been since being diagnosed. Gd bless those of you who are this sick for years before being diagnosed!

[Takala]

"Why" this happens, no one has actually come up with an explanation for it yet, but it is a real phenomena.  On the surface, your diet "looks" great for a typical celiac who is a male and hungry, with no additional food intolerances.  But for some of us sensitive ones, that sort of diet, especially for beginners, with the sugary desserts, the dairy, the soy and the gluten free oat cross contamination from the Bob's Red Mill brand of flours, is not going to work. You're really challenging your damaged innards.   Do you know yet, if you are one of the subset of gluten free eaters who still react to gluten free oats ? 

[MattandGut]

"Why" this happens, no one has actually come up with an explanation for it yet, but it is a real phenomena.  On the surface, your diet "looks" great for a typical celiac who is a male and hungry, with no additional food intolerances.  But for some of us sensitive ones, that sort of diet, especially for beginners, with the sugary desserts, the dairy, the soy and the gluten free oat cross contamination from the Bob's Red Mill brand of flours, is not going to work. You're really challenging your damaged innards.   Do you know yet, if you are one of the subset of gluten free eaters who still react to gluten free oats ? 

As far as I know, I haven't eaten any oats. There aren't any in the Bob's Red Mill flours I've used, at least according to the labels.

I am thinking I will try limiting myself to meat, eggs, veggies, fruit, nuts, rice, and potatoes and see how that goes. That should be easy enough since I've got very little appetite at this point. If the GI problems clear up, I'll know it was something I was eating and then begin the process of reintroducing foods one at a time to find the culprit.

I just wanted to check in here to see whether anyone might be aware of any explanation aside from sudden new and unexplained food intolerances.

[mushroom]

That is a reasonable looking diet for a beginner - in fact, most of that I could eat myself (except for the corn, soy, potatoes, peanut butter, Bob's Red Mill, taco seasoning, black beans, green beans and peas.)

 

Good point about the lactose - I knew I was intolerant to that before I identified even gluten .  But with additional intolerances, they are sneaky.  They may have been there all along, but it seems like gluten is the bully on the block and pushes everything else out of the way until it is removed.  Then you start hearing the other voices, like "What about me?" 

 

Or it could be that you may not have additional intolerances, and as Takala says, that you have  very quickly developed the stronger reaction to gluten that usually hits us once we have eliminated it and then encounter some again.  Your body gets mad and really kicks it in the butt, so to speak (makes a different type of antibody cell to attack it). 

 

Have you worked really hard on eliminating the other sources of gluten in your life?  Like in personal care products, pet foods, cross-contamination from other household members, at work from computer keyboards, phones and such, or the coffee machine.   Do you wash your hands often and every time before you eat?  I know it sounds a bit OCD, but those who are more sensitive than the rest have to take more extreme measures and some of the things I mentioned are not extreme but should be standard practice.

 

So do you live in a shared household?  That is always a tough one to control.  Tell us a little more and we will help you dig.

 

 

Without putting down an entire profession, do not anticipate too much from your appointment with the dietitian, as so many of us have found that we know more about the subject than they do    You might be lucky and hit a good one

[jhol]

hi there,

 

i too dont suffer with all the gastro symptoms. mainly joint pain and anxiety/ depression. ive been gluten and dairy free for abt 6 weeks now. i felt fabulous for the first 2 weeks- pain gone, brain fog gone, dark mood/thoughts gone, acid reflux gone and rash on palms started to clear up. great!!

 

but now i feel like im back to square one- i seem to be having trouble with eggs and potato,s and peppers/spices. eggs are a major allergen and theres a group of veggies called nightshades- potato,s, tomato,s, all peppers and aubergines, they contain a chemical that can cause reactions.(mushroom told me about the nightshades - thanks )

 

theres something still bothering you - good luck with finding out what. ive just tried cheese for the first time tonight so im now waiting to see whats gonna happen. i may be up a while lol.

 

hope you find out whats causing the problem 

[Takala]

Unfortunately, all the Bob's Red Mill flours are cross contaminated with their gluten free oats, because they are processed in the same mill.  This means if you are sensitive to oats, as a minority of celiacs/gluten intolerants are, even sensitive to gluten free oats, you will react to many of their products.  While I will purchase their gluten-free oats for my husband to eat, because at least they are not contaminated with wheat, also, I do not use them myself, and it is the only oat product allowed in the house, and we treat cleaning up after it, cautiously.  Because oats are not on the "official list" of the top 8 allergens, there is not a requirement that oats be listed on ingredient labels or lists as a possible source of cross contamination, as you get with soy, shellfish, wheat, etc, with the "processed in a facility with....."  warnings.  We don't have official gluten free labeling standards in the USA, and I'm not sure what they are going to do about that "oat problem" in the future for the subset of "oat reactors" needing to eat a gluten free diet.

 

Pet foods also have this labeling problem, as I've got an allergic dog, and he's a living example of what can go wrong with untreated allergies and intolerances, if you are not vigilant.  He's also an example of what can go right, if you finally find a diet that works. (We made his food for awhile, after getting him from the pound, as the vet suggested a recipe that worked really well for him).  The standards for pet food labels are even more relaxed, so the labels don't have to keep up with every bag, and I've seen a lot of mis - labeled and deceptively labeled pet foods, both for dogs and cats, which advertise "gluten - free!" right on the front label, or say "made with chicken and rice!"  but then the fine print on the back reveals things that are barley, oats, malt, generic grain byproducts, etc.  A few years back, we had the brand of dog food we used to use do one of these switches and they added cross contaminated oats to what was a pure chicken and corn product, and my big dog, after a few bowls of this stuff, built up to a reaction, not only started puking all over the house, but chewed a bunch of his fur off and licked himself raw in spots, after we left him alone for a few hours to run an errand-  I was NOT a happy camper when I found this out.        Had to switch brands of dog food to one that doesn't do that.  I have also spoken to some pet food reps that they send out to stores to try to sell some of these brands, about how it is really not helpful to put GLUTEN FREE on the front of the bag when I can show them real wheat and barley gluten in the ingredients list on the back.   They give me this odd look and tell me "but it is all natural ingredients!" or my favorite, "but it doesn't have corn!"   I have fed livestock for nearly 3 decades, don't tell me that there are not other, stray grains mixed up all the time in these sacks of "pure" whole grains for animal feeds, I can cut the bags open and show you it, and tell you how it happens, because of how they sort grains at the mills from the storage silos.   It would make a great horror movie youtube sketch.  "Aggravated Rural Gluten Intolerant with Itchy Dog, vs. Clueless Store Pet Food Vendor."     

 

Going back to a really simple diet is a good idea, although it is frustrating at first.