Gluten Free For 5 Years, 10 Years, Or More?

[T.H.]

My father has been gluten free for a little over 9 years now, and for the past year or two he's started to have trouble again.

He's developed an asthma-like condition. His depression has gotten worse again. His heart is having trouble. Joints and arthritis are starting to deteriorate again.

When he was telling me about this, I thought I recalled seeing a few others on the forum who had been gluten free for more than 6 years or so and were reporting having trouble again, as well. But with my worry about my father, I'm starting to doubt myself. Not sure if I was just noting a couple cases because of my current focus, or if this is an actual trend.

Anyone who has been gluten free for a number of years, I'd be very grateful to know if you're doing well, or if you are starting to have trouble again, too?

In either case, what is your diet like? Do you go the mainly whole foods route, or do you eat a lot of processed gluten-free foods? My father goes the processed gluten-free food route, and I think that this might be the trouble. The more gluten-free products that are coming out, the more gluten-free products he starts to eat, and now he's getting sick. But if others are eating the same way and not having this issue, or this issue is cropping up with a whole food diet as well, then that's likely not the problem.

Really, really wondering if he's just eating so many processed gluten-free foods that he's getting too much gluten for his health, ya know? :-( Any thoughts/ideas would be welcome.

[seashele2]

I have been gluten-free for 6 1/2 years. I was doing much better for the first 2 years, aside from gaining weight. Then I started having problems with MSG. Then dairy. Then soy. Then corn. Then pork. Now sulfites. It seemed after my system was actually absorbing the food I was eating, it didn't like it either. I am incredibly tired of it because even cutting those foods out, I am still not feeling well.

I eat some process gluten-free foods, but not a lot since they almost all contain something else I am not tolerating. I cook almost everything from scratch so I know I am not being cross-contaminated.

I am tired and nauseated, headaches, aching muscles, sore finger joints, and loose bowels. They diagnosed me with micrscopic colitis after my colonoscopy with biopsy and I am taking meds for that, but it doesn't control the bowels all the time.

My doctor is no help. He really doesn't know squat about celiac or any food allergies/intolerances. I plan to switch pretty soon, after my husband is done being followed by the same doctor for a different concern.

There are days that I don't know why I try so hard and spend so much money on special ingredients. I don't think I felt any sicker before my celiac diagnosis than I feel now and eating was definitely easier and cheaper then.

I'm hoping to wake with a better attitude about it tomorrow...

[NorthernElf]

For me it's been 8 years. Stomach related issues definitely have improved/resolved. My weight is healthy, I teach fitness so I'm healthy there too. However, in the last 3 months or so I have developed pain in my hands/wrists/elbows. It seems a monthly thing, if you know what I mean. Doctor tested me for rheumatoid but it as negative...but then not everyone carries the RA factor in their blood. I just got over my third episode, it was not as long or as painful as the other two...but then I skipped my period too (I'm in my 40s, not that unusual). See what happens next month. I have to be careful with my hands. I take Traumeel when things get bad...think it helps. If I have a bad episode again my doc will send me to a rheumatologist, I just didn't bother going in this time.

As for other sensitivities, I avoid dairy products for the most part and can't eat chocolate. I don't overdo soy. I eat pretty clean - as in unprocessed. Good thing I like to cook I guess.

My take on all this is that celiac is a auto immune disease and the gluten-free diet stops the digestive issues but maybe not all symptoms ? Or maybe a "faulty gut" just leaves us open to other sensitivites that are hard to pinpoint - mostly because one has some degree of tolerance. I can have soy a little bit but at some level it's too much and I seem to react similar to a glutening.

[GFinDC]

.... As for other sensitivities, I avoid dairy products for the most part and can't eat chocolate. I don't overdo soy. I eat pretty clean - as in unprocessed. Good thing I like to cook I guess.

My take on all this is that celiac is a auto immune disease and the gluten-free diet stops the digestive issues but maybe not all symptoms ? Or maybe a "faulty gut" just leaves us open to other sensitivites that are hard to pinpoint - mostly because one has some degree of tolerance. I can have soy a little bit but at some level it's too much and I seem to react similar to a glutening.

Hmmm, it doesn't really sound like it's hard to pinpoint. If you are having reactions to soy then purty much seems you shouldn't eat it at all. Why not give it a pass for 6 months and see if you feel better?

[ravenwoodglass]

I have been gluten free going on 9 years now. My health is fantastic with the exception of my teeth. I haven't even had a cold in so long I don't remember when the last one was. I am however very careful with my diet and eat mostly whole foods with the exception of gluten free bread and rarely eat out. I check all supplements and any meds carefully and avoid gluten ingredients in anything that comes into contact with my body. I do also avoid soy and have only been glutened maybe once in the last year, knock wood. My arthritis and asthma are still also in remission.

I would suggest to your Dad that he drop all the processed food he can for a bit and see if it helps.

[T.H.]

I would suggest to your Dad that he drop all the processed food he can for a bit and see if it helps.

That's what I've been leaning towards, yeah. I think knowing how others are doing on his diet and on a less processed food diet might help persuade him. HOpefully. :-)

[Takala]

Check his medications.

Doctors love to put old(er) people on many different medications automatically. Increasingly it seems it's a problem to get pharma manufacturers to disclose the ingredients of the binders, fillers, etc of those prescriptions as to gluten free status. NEVER assume, manufacturers can change this at will.

Also, many prescriptions and over the counter medications can have depression as a side effect, which the drug industry would prefer you not be aware of. The older you get, the less likely your kidney and liver can handle the possible bad side effects. Here in the U.S. of Advertising, we are bombarded with enticements on cable TV about how o.t.c. anti inflammatory drugs like Aleve (naprosin) or Advil (ibuprofen) are going to make Life So Much Better, but they don't mention that they cause depression when taken daily at full strength over a longer period of time.

Is he taking statins? My spouse took those for a while, then had so many side effects, stopped them. Two things I noticed while he was on them was he was coughing a lot more, and just as irritable as all get out, all the time, altho the reason he stopped was something else, fatigue. These drugs affect the liver, and people are really pressured to take them. Google statin side effects.

Also, with his home environment, with the asthma, look carefully for any black mold - and if found, say, in the shower area, get rid of it. Clean it out with bleach water and figure out how to vent the bathroom so it doesn't come back.

All of these conditions flaring up at once, may be signs of something in his food or environment or meds just not being right.

Oh, me ? More than five and less than ten years gluten free. Asthma, joints, mood still overall better than before gluten free, but since I am arthritic and aging, that's not just automatically going to go away because I am gluten free. Aging is difficult for everybody.

Probably eat more unprocessed foods than the average person. Eating like a gluten free glutenoid would probably just kill me in the carbs/sugar department.

[lovegrov]

Thing is, Shauna, everything you describe also can happen to people as they age. Lots of folks WITHOUT celiac have this stuff.

richard

[T.H.]

Thing is, Shauna, everything you describe also can happen to people as they age. Lots of folks WITHOUT celiac have this stuff.

True. No matter the age, lots of people without Celiac Disease can have depression, stomach aches, aches and pains, asthma, etc... And yes, these can become more prevalent the older we get.

But originally, our aches and pains and so on were the result of our disease. I know that doesn't mean that everything that happens to us from now on is going to be due to our disease, but I think it does mean that everything that happens to us from now on needs to be looked at more closely. With so much still to learn about our disease, it seems a smarter way to do things.

And I'll admit, I didn't clarify the question, which I really should have. I'm wondering if folks are having trouble that is different than what feels like the normal changes due to puberty, aging - whatever they're going through. Admittedly, we can only make educated guesses, but a lot of us have been through this before, and we get better at looking at our health and our bodies and interpreting what we are seeing. I think a lot of us had to become better body detectives if we wanted to be diagnosed, frankly.

As an example, take my father's asthma. Which the doctor's say isn't asthma, but it looks like asthma...sort of. They don't know what it is, they don't know why he has it, but he's having trouble breathing, he's having damage to his lungs that is often caused by bodily inflammation even though they can't think of why his body or lungs would be inflamed (and can't find any evidence of it). And asthma medication is not helping much at all.

Everything else going on with him is along that vein. It's all in that 'weird' category, where the doctors aren't sure why it's happening, the normal cures/treatments aren't working like they should...in other words, it feels rather like it did in the few years leading up to his diagnosis. His body is having trouble earlier than it should, or different than 'the norm.' And it may simply have to do with all the damage he suffered when he was younger and undiagnosed. It might have to do with current diet. It might have nothing to do with Celiac Disease whatsoever.

But it's also something, as I said, that I'm very interested in seeing if others are experiencing as well. And if so, how their experiences might match up with my father's, in case anything can help.

[ravenwoodglass]

As an example, take my father's asthma. Which the doctor's say isn't asthma, but it looks like asthma...sort of. They don't know what it is, they don't know why he has it, but he's having trouble breathing, he's having damage to his lungs that is often caused by bodily inflammation even though they can't think of why his body or lungs would be inflamed (and can't find any evidence of it). And asthma medication is not helping much at all.

Have you seen the recent articles about asthma being another thing that can possibly linked to celiac inflammation?

Here is a link to one article

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