What Would You Do In My Situation?

[KevinG]

I am fed up with the lifestyle restrictions of staying 100% gluten and dairy free, especially when combined with the restrictions of my other health conditions.

I wonder if this strict approach might be unnecessary, since some tests suggest I don't have celiac. My gastroenterologist (an IBS researcher) downplayed the risk and said that my body might just be sensitive to certain proteins.

I don't mind eating a low-gluten, low-dairy diet. I just want to be able to go to a restaurant and not worry whether there's a bit of soy sauce in my fried rice, or whether my chicken tikka masala has too much cream in it.

The immediate symptoms from eating gluten or dairy are not that bad. But I am concerned about the risk of gluten or dairy causing hidden or long-term damage to my body.

I've given up getting a conclusive answer since I know medical science is not there yet. So, I'm going to lay out all the evidence right here as clearly as possible, and listen closely to the subjective judgment of the folks on this forum. In several months I'm going to NYC to see celiac expert Peter Green and hopefully get an informed recommendation from him too.

Demographic info

Male, 26 years old. Gluten & dairy sensitivity started suddenly 4 years ago after an adverse drug reaction (I am sensitive to adrenergic drugs like Cymbalta and Sudafed).

Lab tests

See my signature below for my 2006 Quest and 2009 Enterolab results.

Reaction to eating gluten

- When I eat small quantities: unclear since sometimes I might get glutened without knowing it, but I think I get mouth sores more frequently

- When I ate lots of wheat (before starting the gluten free diet in 2006), I had:

○ Mild numbness in my stomach

○ Limbs falling asleep easily (paresthesia)

○ Occasional twitching in my eyelids & fingers

○ Sensitive skin

Reaction to eating dairy

Before going on a dairy-free diet, I had lots of gas and possibly elevated thirst. However, recently I've been experimenting with small amounts of cheese and milk and haven't had any bad reactions yet.

Health background

Interstitial cystitis for 8 years. Strict gluten-free diet doesn't affect my symptoms. Also had brushes with stomach pain. Unclear whether this is related to gluten.

Family history

Sister: positive TTG, positive transglutaminase, positive endomysial, negative biopsy.

[Takala]

I would have had a very different adult life if the internet had been available for me to research on at half the age I am now. I would have avoided a lot of damage.

I had to self diagnose as an older adult based on a combination of research, observing my symptoms, and medical tests and trial and error elimination diets, because the medical doctors did not and would not correctly diagnose me, what is worse, is that not only did I catch a doctor lying to me about test results, I had them try to un diagnose another auto immune disease I have had since my early twenties. Now that I am older, I am just a lot more direct, and if they try to blow me off I have more than enough info at my disposal that I can deal with it. Of course, if I were to be incapacitated, I figure I'm gone at that point.... but currently, I can handle the doctors misunderstanding somewhat. My current PCP takes me seriously because he's both seen damage on scans of certain body parts, and I told him years ago I hadn't eaten gluten in "x" number of years and there was no way in **** I could be forced or convinced to start eating it again. One of my many symptoms was persistent kidney problems and UTI infections and there is just no way I would even be tempted to be going through that again. Oh, that's an indirect warning of bone loss, btw.

I cannot fathom wanting to deliberately harm myself further.

There are already ways to eat out in restaurants and obtain a gluten free meal, gluten free AND dairy free would be harder but still doable. I was able to eat dairy again as long as it's lactose free such as cheese or yogurt (certain brands) and preferably organic once I had been gluten free seriously for about a year.

One of the symptoms of cheating just a little bit on the diet seems to be the urge to continue craving gluten and to want to continue cheating on the diet.

I really don't see the diet as being as hard as many people make it out to be, but that's not the kindest thing to say to a newbie who is struggling with label reading or how to handle social situations.

Given your test results and family history, I would be asking myself what was the real motivation behind wanting to play fast and loose with my health.

Of course, my spouse says I am the most independent person he knows of, and I really don't care if there's any social or family pressure to conform- I eat at home, or I just pack food for lunches and snacks, and if we eat out we've checked out the restaurant first. It had the added benefit of there's more $ to do other things if we come home to eat afterwards. And if we want something special, we just make it ourselves.

And yes, I have a few relatives I think should be on this diet, but I cannot force them to do anything, only offer acceptance but insist on taking care of myself.

[Looking for answers]

If your limbs fall asleep eating gluten, do YOU think it's a good idea to keep eating it? I think that's a pretty serious side effect.

I envy you. I cannot eat soy, corn, nuts, dairy or gluten. I don't let it get in the way of my life though. Yes, I have to pack my lunch and think ahead about things, and be super careful at restaurants, but it's better than being sick or having to take medication for the rest of my life. That's the way I look at it.

[cap6]

if you eat something that makes you sick why would you want to continue eating it? I am almost 60 years old and only 5 months into this and it is very hard to change that many years of eating and Yes! I hate it. I hate it because I really really dislike cooking however I really really love life so guess it is almost a no brainer for me. I don't like getting sick so for me there is just no choice. I hope that you will think it over cause if you continue to gluten yourself you may suffer greatly when you are older.

[mushroom]

I really don't know, Kevin. Maybe none of your reactions yet have been sufficiently serious to convince you of what you should do.

I have no diagnosis of anything (other than self) but I would never knowingly put a piece of gluten in my mouth. Plus there are multiple other things I would not put in my mouth either because the consequences are so dire.

I am at the point now where I am actually contemplating being able to give up my Humira injections (which suppress my immune system) because I believe that with the dietary stuff under control my body is no longer producing the psoriatic arthritis. This decision is subject to day-by-day trial, but I am hopeful, because one does not want to go through life without an immune system I still have dietary work to do and am working with a nutritionist on that, so I guess what I am saying is that I really cannot relate to your situation and your contemplated course of action. I would say that my personal opinion is that if gluten gives you numbness it is doing you harm and you should not consume it.

[GFinDC]

Hmmm, numbness and twitching could indicate nerve damage or brain affects. Perhaps you should read up on gluten ataxia and how it affects people. Dairy may not be a problem for you though. Celiac damage can heal after a while on the gluten-free diet, which can lead to a recovery of the ability to eat lactose, the sugar in dairy. The tips of the villi in your small intestine make the lactase enzyme that digests lactose sugar, so when they are damaged you will have problems with dairy sugar. If you keep eating gluten and damaging your intestine though, dairy is going to keep being a problem.

There have been other people who ignored the diet and lived to regret it. Constant damage to your body is going to become more and more of a problem over time. Sometimes the damage kicks into high gear suddenly too and then you are screwed. You can't always recover by going back on the diet, with some things, the damage is permanent.

It is easier to be a celiac now than in the past. Lots more pre-made food options in stores, lots more restaraunts making gluten-free food, lots more awareness in general in society.

Have you spent any time reading the signature lines of some of the posters on this forum? You might try it for a few days and think about what it means.

There are worse things in life than not eating a stupid donut or pizza. You likelihood of developing new additional food intolerances will probably be higher if you keep eating gluten also. You could develop intolerances to more foods that you might not want. When your body is constantly at war with itself things are going to go wrong. You are playing with fire if you ignore the diet.

[ravenwoodglass]

Hmmm, numbness and twitching could indicate nerve damage or brain affects. Perhaps you should read up on gluten ataxia and how it affects people.

That was what I was going to say. You do NOT want the brain impact to continue. If you do it is a very, very long and hard fight back. I know I have been on that road now for 8 years. I would give anything to have been dignosed when the main nerve symptoms I had were just the twitching and numbness. Even very small amount of gluten are enough to have me falling over and unable to think clearly again for weeks.

Is the diet inconvient, well yes at least at first. But things are so much easier now than even 8 years ago when I was at last diagnosed. We can find all the junk food we want. There are pizzas, bagels, doughnuts and decent bread. Even my small town has restaurants that are advertising gluten-free menus and there were none 8 years ago.

Please take your diagnosis seriously. You don't know what other systems your body will choose to attack if you don't. While most damage can be repaired with time in a lot of people there are some points from which some of us can't get back. You don't want to end up there. As mentioned read some of the signatures here, including mine, and then think long and hard if 'cheating' on this diet is really worth the risk.

[India]

Hi Mushroom - having seen the wondrous different that Humira makes to my husband's arthritis, I think it's amazing that you've improved enough to try going without it. He tested negative for coeliac disease and had no response to going gluten-free - his arthritis seems to be a genetic curse. But in the cases where gluten causes noticeable problems, it makes no sense to continue eating it.

Kevin - if you're already noticing damage, who knows what other problems you're storing up? Sorry to be so stark, but I wish I'd known long ago not to eat gluten.

[mushroom]

Hi Mushroom - having seen the wondrous different that Humira makes to my husband's arthritis, I think it's amazing that you've improved enough to try going without it. He tested negative for coeliac disease and had no response to going gluten-free - his arthritis seems to be a genetic curse. But in the cases where gluten causes noticeable problems, it makes no sense to continue eating it.

Kevin - if you're already noticing damage, who knows what other problems you're storing up? Sorry to be so stark, but I wish I'd known long ago not to eat gluten.

India, thanks for post. Initially when I gave up gluten it made no difference to my psoriasis or arthritis, hence the Humira which has been a godsend. But I had so many other intolerances show their ugly faces and I think all of them were affecting everything. Now that (I think) all are identified and eliminated, I think my body is starting to show its relief. I could be talking out the other side of my face in a while but I'm weaning. Will take another shot this Sunday (after 5 weeks) and then see what happens after that.

Kevin, there is no doubt that gluten causes subsidiary damage to the body - why would you want to risk that? Believe me, none of it is any fun, certainly too much misery to risk consuming gluten. Hang around the board more and read the stories - if they don't change your mind I would be flabbergasted.

[KevinG]

Thanks for the informative replies. I still have a lot to learn about gluten & celiac disease.

The reason I've considered allowing a bit of gluten into my diet is that I've always considered myself to have gluten intolerance but not celiac disease.

I've believed this because:

(1) I hardly get side effects from small amounts of gluten, whereas many others here have severe reactions.

(2) Most of my lab tests indicate that I don't have celiac.

According to Open Original Shared Link page on AmericanCeliac.org, if I only have gluten intolerance I should not be at risk from a bit of gluten:

People can also experience ‘intolerance’ to gluten. Food intolerances are not thought to be immune mediated. GI symptoms with wheat or gluten intolerance may include gassiness, abdominal pain, abdominal distension, and diarrhea. These symptoms are usually transient, and are thought NOT cause permanent damage.

So, my remaining questions are:

(1) Is there anything in my case that suggests I have celiac and not gluten intolerance? (Apart from the general hypothesis that all gluten intolerance is misdiagnosed celiac.)

(2) Why is lactose/casein considered safer to experiment with, compared to gluten which is to be avoided strictly? I see many more people on this forum eating dairy, even if they get mild side effects.

(3) Based on the advice I'm hearing here, I might avoid all gluten, BUT start incorporating a couple of dairy servings a day into my diet and see if I can tolerate the side effects. Does this sound reasonable?

Understanding these things better would settle a lot of my confusion!

Thanks,

Kevin

[T.H.]

To answer the question if any of this suggests celiac disease vs. gluten intolerance? I don't believe so, necessarily. However, to be blunt?

So what?

You are having reactions when you eat these foods, yes? That means they are doing something TO you, and you don't know what. And you likely can't find out what, either. Doctors are still trying to figure this stuff out: celiac disease, food allergies, food sensitivities. They are still studying all of this, and they find out new stuff everyday. And some of the new information definitely falls into the category of: wow, we didn't realize how much this screwed up your body. Who knew?

So can there be long term damage by eating any gluten and dairy? Absolutely. It could be doing damage that could affect your nerves, your joints, your anything.

Could it be that it does very little to you and you'd be doing all this for no real reason? That's a possibility, too. Maybe it's barely affecting you at all. Although if you are having reactions, I'd bet on the former rather than the latter.

And there's no real way to tell what damage it's doing other than to eat it, or not, and see how you feel decades from now. Which pretty much sucks as a choice, I know. I've got a few foods I've had to make that choice over, where I'm not allergic, not intolerant, but they still make me react in some manner. But with no tests that find them to be 'bad' for me, I've had to decide whether or not to eat 'em or not.

I think the best thing to do in this situation is write down a real Pro and Con list. What are the 'worst case scenario' cons of staying on a strict diet, vs. the 'worst case scenario' cons of eating some of these foods and causing damage? What are the pros of both choices?

When I did that - just ticked 'em off in my head - it wasn't even a contest. Eating out and having convenient meals mattered to me, but they didn't matter as much as potentially losing my health again. And heck, no matter what, I'm eating a lot healthier without the extra foods, and I spend a LOT less money on eating out, LOL.

Good luck to you on whichever choice you make.