Asymptomatic Celiac, And Now That I've Gone Gluten Free Am Having Stomach Problems

[Bassman826]

I've been gluten free for about 2 and a half weeks now, and my stomach has been worse than it was when I was on gluten. This is particularly noticeable because I had no gastrointestinal symptoms of Celiac disease (I was asymptomatic aside from low bone density, which is a frightening enough prospect to make me stay gluten free). But I've had things just going right through me since I've gone gluten free, and had to use the restroom for No. 2 up to 4 times a day. Prior to going gluten free, I was very, very regular (1-2 times per day), which surprised all my doctors.

Now, clearly a couple weeks worth of data isn't enough to make me question whether a gluten free diet is the best thing for me. It's quite possible that I've had a minor stomach bug for a few days that is doing this to me. But it's also almost certainly not an issue that I'm accidentally getting tiny amounts of gluten in my food, considering gluten has never led to gastrointestinal symptoms for me.

So I'm just wondering if anyone has had similar experiences? I know the community of asymptomatic people with Celiac who know they have Celiac is small in the US, but I'm just sort of curious if other people have had similar issues and then felt better as they got a month or more in?

[Kay DH]

I was asymptomatic until I got the flu last September. Then the GI and other floodgates opened. I went off gluten in November not because of the D and other GI problems, but because of extreme stiffness in my hands in the morning. The rheumatologist was of no use and I read that going off gluten can resolve the inflammation. Well, for me it worked in that the arthritis left after 1.5 months and the mood and GI problems resolved in a few days. Last fall I could eat as much as 1/2 an English muffin with only minor symptoms, now it is at the crumb level. What happened to me, and others as I cruise the blogs, is that your sensitivity to gluten can go way down after you are off the nasty molecule. What that means is that CC didn't effect me last fall, but once I went off gluten completely (no "processed in a plant that processes wheat...", hydrolyzed vegetable protein,...) even a tiny amount of cc can turn my GI tract into a high speed rail system. A bit more and the other gluten symptoms hit, too. If this is a factor with you, then it wouldn't take much gluten to cause the same or worse symptoms that you had when you were gluten-full. For a while you might keep a food log of everything that you eat and see if there is any relation between intake and symptoms. Tis a bit of a pain, but once you get the hang of completely gluten-free life is much better. I assume you were checked for dairy and other allergens; you could also try eliminating some of these to see if you can find culprits.

[Bassman826]

But I've been gluten free for less than a month. It's not like I haven't eaten gluten in half a year, or even 1/12th of a year. And it wasn't like I could eat half an english muffin and not feel sick. It's like I could have gotten all my daily calories from english muffins and not noticed a thing.

And I wasn't checked for any other allergens because I didn't have any (and by any I really mean any) GI symptoms. I didn't go on a gluten free diet to be alleviated of any GI symptoms, I went on a gluten free diet to not get ostheoperosis at age 54.

[Dixiebell]

Are you eating more of something else that you were not eating before you went gluten free?

[Bassman826]

Aside from the amount of rice flour and other gluten free grain type varieties that I wasn't eating much before, no, my diet has stayed pretty much the same. Maybe slightly less protein, but not much.

[Chakra2]

This might not be your issue, but there are several gluten-free foods that cause me stomach pain: dairy, soy, corn and rice. Nightshades (potatoes, tomatoes, eggplants, peppers) cause me severe joint pain, but not stomach pain. Celiac disease does bizarre things to your intestines -- it could be that, even without GI symptoms, its caused you to have an intolerance to another food. Also, are you sure you have all gluten out of your diet, bath products, significant other's diet, etc? As you eat gluten-free, you might become more sensitive to even small amounts of gluten. Hope you can feel better soon.

[mushroom]

Going gluten free does give one unexpected surprises. For me I knew that corn and soy were problem foods, but I never suspected that nightshades (tomatoes and potatoes, ferevvinsake) could be a problem. Those were my comfort foods. Pizza always made me feel good. My favourite side dish was ratatouille with most of the nightshade family in there. Nevertheless, I am intolerant of nightshades, as it turns out. What seems to happen is that our body is so busy trying to respond to gluten (in whatever way it figures how, and as you have discovered, in so many different ways for different people; e.g., I do not have osteoporosis despite having obviously been gluten sensitive for 30 years) that the response to other food intolerances is masked. Once the gluten is banished the other foods get a chance to have their voices heard. That is why celiacs ofen discover co-food intolerances that were previously unsuspected. I would suggest that you eliminate at least lactose for now (milk, cream, ice cream, frozen yogurt, soft cheeses) for now, and if that doesn't work than all dairy to see if that makes a difference to the way you feel. What have you got to lose except the discomfort, and you have your good health to gain. Of course, by eliminating diary you need calcium supplements, but if you have osteoporosis you need calcium and Vitamin D supplements anyway.

[T.H.]

I was an asymptomatic celiac, too. A bit overweight, no GI issues at all, no food allergies or issues - they found the celiac disease because I was having a biopsy for something else entirely and asked if they could check for it 'while they were down there' as a relative had it. Very unexpected.

For me, 2 weeks was absolutely enough time to start having reactions of some sort. I started having trouble at day 2. 0.0 I started feeling dizzy, stomach pains, the runs, headaches - I kept thinking just like you've said: maybe I have a stomach flu or something. There's no way there could be a change this quickly from going gluten free. It can't be gluten, because I don't have GI symptoms to it. I don't have any other food issues, so it can't be that, either.

At least in my case? Wrong on all counts.

What my situation has been is this:

1. I DID have other food allergies. Soy, dairy, eggs, and so on - a little laundry list of 'my favorite foods that I can now kiss goodbye.' Active Celiac disease can mask the symptoms, or keep the body from reacting to them as noticeably (as I understand it). And when you go off gluten, your body can kind of over-react to the other allergens. I also simply had some foods that made me feel crummy - no idea why, or how, but I was lucky enough to have a GI doc who is of the opinion that 'if it hurts you, don't eat it.' That's helped a lot.

2. Eating gluten free, I was getting more of things that I was allergic to, like sugar cane, which is in a lot of the gluten-free foods, in less processed form, so that more of the allergens are there to zap me.

3. Even though I never had a GI reaction to gluten, when I went off it, it turns out I am VERY sensitive to it. I get major GI reactions to gluten, ever since those first few days going off of gluten. Oddly enough, thinking back, I can remember the few times I had a stomach flu - and was likely off gluten as I didn't eat anything - it used to take me longer to recover than anyone in the family. I now wonder if I was starting to have these 'gluten reactions' but they toned back down after I continued to eat gluten. Who knows.

I didn't improve until I dropped the other foods that were bothering me and became exceptionally strict about avoiding any potential gluten. Even gluten free listed foods sometimes still have enough gluten to cause me difficulty. Also - dairy could be a big problem, if you still have that in your diet? The villi damage is in the same place that produces the enzyme to digest lactose, so that might be causing problems now, potentially, too.

To add to the asymptomatic celiac's stories, though, my daughter and father are both in that category. My father stayed relative asymptomatic. No real noticeable change after going gluten free, for a month or so, and then he'd get a slight case of the runs the day after getting gluten, but that's about it for him. However, at 8 years into this, he's starting to have problems and he's not certain why, so he's heading back to the GI doctor's to see what's going on.

My daughter is somewhere between myself and my father. She felt more tired and generally 'blech' after going gluten free, but no runs or other symptoms. We cut out the 8 major allergens from her diet, went to home-made unprocessed foods, and kept a food journal, and she improved a lot. We've now found a few foods that seem to bother her system, even though we'd never realized it before. She stays away from those AND gluten, and she's good.

I wish you good luck - hope you start to feel better soon!!

[blissfully-unaware]

I've been gluten free for about 2 and a half weeks now, and my stomach has been worse than it was when I was on gluten. This is particularly noticeable because I had no gastrointestinal symptoms of Celiac disease (I was asymptomatic aside from low bone density, which is a frightening enough prospect to make me stay gluten free). But I've had things just going right through me since I've gone gluten free, and had to use the restroom for No. 2 up to 4 times a day. Prior to going gluten free, I was very, very regular (1-2 times per day), which surprised all my doctors.

Now, clearly a couple weeks worth of data isn't enough to make me question whether a gluten free diet is the best thing for me. It's quite possible that I've had a minor stomach bug for a few days that is doing this to me. But it's also almost certainly not an issue that I'm accidentally getting tiny amounts of gluten in my food, considering gluten has never led to gastrointestinal symptoms for me.

So I'm just wondering if anyone has had similar experiences? I know the community of asymptomatic people with Celiac who know they have Celiac is small in the US, but I'm just sort of curious if other people have had similar issues and then felt better as they got a month or more in?

Oh, I'm glad I saw this thread. I've been gluten-free for 2 weeks now. I hardly had any symptoms earlier, apart from loose stool (and weight loss couple of months back). Surprisingly, noticed my stool felt normal after 3-4 days of being gluten free. But these 2 weeks have produced such random symptoms like bloating, burning sensation at the base of my throat (acidity, I think), dry mouth and sometimes a strange taste in my mouth. I've never had these symptoms before! I'm still eating dairy products, so not sure if I've suddenly become lactose intolerant?? Apart from removing gluten from my diet, I haven't made any major changes to my diet, apart from increased intake of rice and started eating millets. Not sure if these are causing the problems? I'm still using the my wheat protein shampoo and Aveeno moisturizer (has oatmeal) though....

[julandjo]

Oh, I'm glad I saw this thread. I've been gluten-free for 2 weeks now. I hardly had any symptoms earlier, apart from loose stool (and weight loss couple of months back). Surprisingly, noticed my stool felt normal after 3-4 days of being gluten free. But these 2 weeks have produced such random symptoms like bloating, burning sensation at the base of my throat (acidity, I think), dry mouth and sometimes a strange taste in my mouth. I've never had these symptoms before! I'm still eating dairy products, so not sure if I've suddenly become lactose intolerant?? Apart from removing gluten from my diet, I haven't made any major changes to my diet, apart from increased intake of rice and started eating millets. Not sure if these are causing the problems? I'm still using the my wheat protein shampoo and Aveeno moisturizer (has oatmeal) though....

Ohhhhh yeah, those need to go. They can absolutely cause you problems. Sorry.

[blissfully-unaware]

Ohhhhh yeah, those need to go. They can absolutely cause you problems. Sorry.

Sigh.... will look for gluten free shampoo once I finish the current one. I guess I need to change even my hand wash, face wash, etc.

[CDInSanDiego]

Hi guys,

I have been asymptomatic celiac disease for five years. Unless you are eating your shampoo, you should be fine. Remember, celiac disease is an auto-immune disease that takes place in the small intestine. Your shampoo should be just fine.

[Ennis-TX]

2 hours ago, CDInSanDiego said:

Hi guys,

I have been asymptomatic celiac disease for five years. Unless you are eating your shampoo, you should be fine. Remember, celiac disease is an auto-immune disease that takes place in the small intestine. Your shampoo should be just fine.

OLD post but FYI if you wash you hair with gluten...you got it on your hands your going to eat later. Wash you hands goody goody, but your going to rub your hair later to move it out of your eyes or just to brush OOPs you glutened your hands again, you touch anything your putting in  your mouth later and glutened your self.....yeah sorta becomes a issue when your own body is a gluten ink well that you keep touching and gluten coating your hands with. Just play it safe, get bloody gluten free shampoo without wheat or its derivatives in the ingredients, very easy and frankly it should not be in your shampoo anyway even if its a great binding agent to keep keratin, vitamins, and minerals in your hair.

AND yes I will bash everyone on this topic...I have hair halfway down my back. Gluten in it would a nightmare CC issue with everything.

[Gemini]

3 hours ago, CDInSanDiego said:

Hi guys,

I have been asymptomatic celiac disease for five years. Unless you are eating your shampoo, you should be fine. Remember, celiac disease is an auto-immune disease that takes place in the small intestine. Your shampoo should be just fine.

You are correct with this but many people don't believe it.  My attitude is that if you worry about this, then use gluten-free shampoo. If you understand the concept of cc and are comfortable with it, then use whatever you want.  The bottom line is that you rinse your hair well after shampooing it so, unless you chew on your hair for hours on end, the odds of you actually being glutened by this is practically nil.

[CDInSanDiego]

3 hours ago, Ennis_TX said:

OLD post but FYI if you wash you hair with gluten...you got it on your hands your going to eat later. Wash you hands goody goody, but your going to rub your hair later to move it out of your eyes or just to brush OOPs you glutened your hands again, you touch anything your putting in  your mouth later and glutened your self.....yeah sorta becomes a issue when your own body is a gluten ink well that you keep touching and gluten coating your hands with. Just play it safe, get bloody gluten free shampoo without wheat or its derivatives in the ingredients, very easy and frankly it should not be in your shampoo anyway even if its a great binding agent to keep keratin, vitamins, and minerals in your hair.

AND yes I will bash everyone on this topic...I have hair halfway down my back. Gluten in it would a nightmare CC issue with everything.

Easy there. Everyone should be doing whatever they need to in order to take care of themselves. If gluten free shampoo causes you to live an anxiety free life, then by all means - do it.

However, there are a lot of people working with some half-baked information when it comes to celiac disease, or if someone has celiac disease, or what someone with celiac disease can eat, etc. I just want to make sure that when we, people with celiac disease are talking about it, that we are coming from an understanding of how this auto-immune disorder causes discomfort and not feed into paranoia that so often becomes associated with it.

And Ennis, just be nice on these boards. I understand your concerns and you opened my eyes to the need for gluten-free shampoo, but there is no need to bash anyone here. Take care.

[PandieRed]

Hi! Brand new to this fabulous web site. Quick introduction...I'm 44 and had been very sick for years, off work for several months & even had an electric wheel chair because of severe fatigue/somnolence (like Narcolepsy) and my muscles/joints were too weak to function. Had no idea what was wrong...did massive tests, saw specialists & no answers. Not until I shelled out my limited cash & saw a Functional Medicine Practitioner who suggested unconventional tests and an elimination diet did finally answers become more clear. DNA results showed 2 copies of HLA-DQB1, I've had Type 1 Diabetes for 18 years, had blood & stool tests with antibodies off the charts (twice the highest number of the high range), high sed rate & CR-proteins, nutritional tests showing pretty much zero healthy gut flora & nutrient deficiencies. Been strict gluten-free (plus eliminated other usual suspect food irritants) for 3 months and have seen big improvements. I still have painful & weak joints/muscles, but figure it will take a while. Decided to get an official diagnosis and have an appt with GI Dr. in a few weeks. (Side note: a bit freaked out about going back on gluten, but really want an official diagnosis.)

So the topic of this thread, "gluten-free Shampoo?" I recently noticed while I am rinsing my shampoo, face wash, shave cream (I'm blessed with an overabundance of facial hair), the suds run into my nose a bit and of course down my throat before I realize what happened. It can be unavoidable  if the water hits you just right & your head is slightly tilted a certain way. My thought was, "OH NO...I have no idea if there is gluten in my shampoo, face wash or shave cream!" Since this experience (a few times now) I think it is very possible to get "glutened" by personal care products. Also thinking face lotions or sunscreen. If it's raining or you sweat and some drips down your face, inadvertently into your to nose/mouth. I'm an avid hand washer, but what if I put lotion on and I eat a quick item w/o washing my hands and it gets on my food. I guess I'm not willing to chance it, being so new to this and how incredibly disabled I was & still am. I haven't come across a gluten-free list of personal care products on here yet. If I don't find one, maybe I will aim to make one here. I definitely think personal care products should be considered & talked about.

Thus far I have found the brand Nourish Organic is wonderful, not too expensive and includes a gluten-free label on their products.

Cheers & Well Wishes! :-)

 

[Ennis-TX]

3 hours ago, PandieRed said:

Hi! Brand new to this fabulous web site. Quick introduction...I'm 44 and had been very sick for years, off work for several months & even had an electric wheel chair because of severe fatigue/somnolence (like Narcolepsy) and my muscles/joints were too weak to function. Had no idea what was wrong...did massive tests, saw specialists & no answers. Not until I shelled out my limited cash & saw a Functional Medicine Practitioner who suggested unconventional tests and an elimination diet did finally answers become more clear. DNA results showed 2 copies of HLA-DQB1, I've had Type 1 Diabetes for 18 years, had blood & stool tests with antibodies off the charts (twice the highest number of the high range), high sed rate & CR-proteins, nutritional tests showing pretty much zero healthy gut flora & nutrient deficiencies. Been strict gluten-free (plus eliminated other usual suspect food irritants) for 3 months and have seen big improvements. I still have painful & weak joints/muscles, but figure it will take a while. Decided to get an official diagnosis and have an appt with GI Dr. in a few weeks. (Side note: a bit freaked out about going back on gluten, but really want an official diagnosis.)

So the topic of this thread, "gluten-free Shampoo?" I recently noticed while I am rinsing my shampoo, face wash, shave cream (I'm blessed with an overabundance of facial hair), the suds run into my nose a bit and of course down my throat before I realize what happened. It can be unavoidable  if the water hits you just right & your head is slightly tilted a certain way. My thought was, "OH NO...I have no idea if there is gluten in my shampoo, face wash or shave cream!" Since this experience (a few times now) I think it is very possible to get "glutened" by personal care products. Also thinking face lotions or sunscreen. If it's raining or you sweat and some drips down your face, inadvertently into your to nose/mouth. I'm an avid hand washer, but what if I put lotion on and I eat a quick item w/o washing my hands and it gets on my food. I guess I'm not willing to chance it, being so new to this and how incredibly disabled I was & still am. I haven't come across a gluten-free list of personal care products on here yet. If I don't find one, maybe I will aim to make one here. I definitely think personal care products should be considered & talked about.

Thus far I have found the brand Nourish Organic is wonderful, not too expensive and includes a gluten-free label on their products.

Cheers & Well Wishes! ?

 

There are quite a few gluten-free personal care products, personally I use EO shampoos and conditioners, The Seaweed Co body washes, acure facial scrubs and I have used several different hand soap but currently love this one by Hugo Naturals that does not dry my hands out.