According To Recent Data, Gluten-Free Doesn't Seem To Be Enough

[Gemini]

Haha I love arguing with theists. Something good happens, thank God. Something bad happens, oh well it's all part of his plan.

Who is arguing? I was making a point but, apparently, it was lost on you.

[Gfresh404]

Who is arguing? I was making a point but, apparently, it was lost on you.

No it's just that your point was weak and contrived. What about the people that don't adapt well and can't live a normal life? What are the supposed to do? I'm fully aware of how bad other people have it - and call me what you will, but frankly I don't give a s$#& about them. I put myself first. Once I fix myself, then I can help take care of others.

I am also arguing because if you think that being diagnosed with Celiac/Gluten Sensitivity is honestly an invisible man in sky's plan for you, when there are little kids starving in Africa, then you are truly lost. You thinking that God has a plan for you is just your way of rationalizing what's happened, which is fine, but don't try to tell other people who may or may not even believe in god that he has a plan for you.

The only positive notion I was able to take away from your response was your last sentence: There is life after a Celiac diagnosis.

[psawyer]

Okay folks, we have gone way off the original topic. This is about healing from celiac disease, not about God and Satan. Religious discussion does not belong here. Please keep to the original topic.

[IrishHeart]

So true. Some days I'm not sure I have the stomach for it.

:lol: :lol:

Thanks for that, hon. hehehe

I always say to people who ask me about celiac, if you think gluten is causing you trouble, Go with your gut.

Sadly, humor is lost on some folks. Even in the depths of my despair, I found a way to laugh. We humans take ourselves way too seriously sometimes, doncha think??

[Gfresh404]

Okay folks, we have gone way off the original topic. This is about healing from celiac disease, not about God and Satan. Religious discussion does not belong here. Please keep to the original topic.

Gemini - PM me if you would like to respond

[Kjas]

I am not surprised by this at all. Of the 12 celiacs I have met, not one of them has healed to the point where they feel as healthy as they did before the celiac disease kicked in.

I don't take multi vitamins but I make fresh vegetable juice with a little bit of fruit in it 3 times a day. I've tried not juicing or only doing one and I just don't get the nutrients I need from it and if I forget to juice after 3 days I feel completely flat and useless energy wise.

[IrishHeart]

I have met several middle-age or older celiacs, the majority of whom tell me they feel great now (with the average healing time among them 6-9 years).

My favorite recovery story is a woman in her 70's, who told me flat out that she "never knew how it felt to feel GOOD" until now. She realizes she felt like crap her whole life (but thought it was how everyone felt--that it was "normal" to feel that way.)

She moves and acts like someone in her 50's. She has energy and a great attitude.

I said to hubs "Great, a few more years healing time and I am going to be one happy, healthy old broad".

I too, take supplements. I had to boost my B-12, D and Folate levels with doctor prescribed dosages (as they were severely depleted, but are fine now), a broad-spectrum probiotic, a good multivitamin, essential fatty acids & cal/mag.

Otherwise, most nutrients come from the foods I eat.

I think healing just takes time. For some like me --who were deathly ill and long- unDXed-- it takes a lot longer.

(IMHO: I read the article that was linked, but it did not convince me of anything. I know how a skilled cut-and-paste of select passages from various sources to make a persuasive point is a great marketing tool. NOTE: I am NOT saying anything derogatory about the SCD because many of you swear by it and I know it works for you, so please, no pouncing on me. )

[Gemini]

I am not surprised by this at all. Of the 12 celiacs I have met, not one of them has healed to the point where they feel as healthy as they did before the celiac disease kicked in.

I don't take multi vitamins but I make fresh vegetable juice with a little bit of fruit in it 3 times a day. I've tried not juicing or only doing one and I just don't get the nutrients I need from it and if I forget to juice after 3 days I feel completely flat and useless energy wise.

But do you think they really felt well before the diagnosis? Sometimes, the downhill slide is so slow, you do not realize how bad you really are and then it's hard to make a comparison.

It really can take a long time to heal well and that is something people don't really understand today. I went 3 full years before all of my symptoms went away. I have taken probiotics for years, well before my diagnosis so that may have helped me heal well. There are so many factors involved, coupled with individual needs, that one should not despair that they will ever heal. You also have to take into account aging, which will produce additional problems whether you have Celiac or not.

[Kjas]

True but the people I am talking about, 9 of the group have been gluten-free for 8-15 years. The 3 are in the 4-8 years gluten-free category. About half of them are under 30. Even taking that into account, it stacks up in my personal experience.

I am well aware of that slow decline, it becomes like a slippery slope. But at some point before the disease was triggered, most of them felt well at some point.

It won't stop me from trying everything I can to get better, I know that none of them have researched anywhere near as obsessively I have or been trying the things I have nor did they work with a specialist after getting diagnosed.

[Gfresh404]

True but the people I am talking about, 9 of the group have been gluten-free for 8-15 years. The 3 are in the 4-8 years gluten-free category. About half of them are under 30. Even taking that into account, it stacks up in my personal experience.

I am well aware of that slow decline, it becomes like a slippery slope. But at some point before the disease was triggered, most of them felt well at some point.

It won't stop me from trying everything I can to get better, I know that none of them have researched anywhere near as obsessively I have or been trying the things I have nor did they work with a specialist after getting diagnosed.

Thank you for sharing this info - looks like I might have to be a bit more patient

[cavernio]

If all the stuff I've read about candida is true, like there's a protein in the fungus that's very similar to gluten, then this article makes perfect sense.

I'm still very on the fence about candida...you'd think that with visuals like colonoscopies and endoscopies, a doctor would see the yeast overgrowth like they do when it's in the esophagus or outside the body...or maybe simply the fact of having any candida in the intestines causes the problems when you're a celiac

its all very frustrating :-/

[plumbago]

This article was written in a way that made me suspect it is selling something (The Gluten Free Lie?). I didn't spend a lot of time trying to find out what if anything that is. It's just got that feel to it. So, I googled Fasano, I googled Celiac disease, and other things, and could find nothing else about this new research. I did see the NIH study synopsis linked, so I know the (sensationalistic-seeming) article was indeed referring to something real. But, why is no one else picking up on it? Trust but verify. I'm trying to verify with another article. If anyone can, please post.

As to what it was saying, I have been pretty skeptical about how we understand celiac disease for a long time, and I have expressed that skepticism. Of COURSE I am on a gluten-free diet, and of course I will continue to follow it. But there's a lot of non-questioning that really bothers me.

The linked article is not really what I had in mind, though, especially since it seems to be a stand-alone site/document with a hard sell edge to it.

Plumbago

[Songbird1976]

I don't know I'm a bit new to be making any statements with confidence but I do know that article scared me quite a bit from my perspective. I will keep a close watch to read what people say on this. I sure wasn't happy about hearing how unhealthy I was and the prognosis for recovery but this article makes it sound very gloomy at best. I guess that's the intention? Ugh I shouldn't have read it.

[mushroom]

Yes, that's the intention - to bring you back for the next installment.

Think about a broken bone. You put a cast on it, it heals and the bone functions pretty well. It may be a little weaker than it was before, there may be some complications in healing depending on the severity of the break, there may be some misalignment, you may still have some pain or disability from the fracture, but mostly you forget about it. Is it as good as it ever was? Well, mostly, except that maybe somewhere down the road you will develop osteoarthritis at that fracture site and that may come back to bite you. Now did that fracture heal???

[Skylark]

This article was written in a way that made me suspect it is selling something (The Gluten Free Lie?). I didn't spend a lot of time trying to find out what if anything that is. It's just got that feel to it. So, I googled Fasano, I googled Celiac disease, and other things, and could find nothing else about this new research. I did see the NIH study synopsis linked, so I know the (sensationalistic-seeming) article was indeed referring to something real. But, why is no one else picking up on it? Trust but verify. I'm trying to verify with another article. If anyone can, please post.

As to what it was saying, I have been pretty skeptical about how we understand celiac disease for a long time, and I have expressed that skepticism. Of COURSE I am on a gluten-free diet, and of course I will continue to follow it. But there's a lot of non-questioning that really bothers me.

The linked article is not really what I had in mind, though, especially since it seems to be a stand-alone site/document with a hard sell edge to it.

Plumbago

I'm not sure what you're looking for. I'd suggest you read the 11 peer-reviewed articles they have referenced, including Fasano's zonulin work, and draw your own conclusion.

I agree there is a blatant hard-sell in that article but I had also read all the research they referenced before seeing it. I had come to pretty similar conclusions on my own before seeing this link, though I'm not sure "fixing a leaky gut with SCD" is the correct next step.

[Gfresh404]

I agree there is a blatant hard-sell in that article but I had also read all the research they referenced before seeing it. I had come to pretty similar conclusions on my own before seeing this link, though I'm not sure "fixing a leaky gut with SCD" is the correct next step.

I really couldn't agree more. I think SCD works for some people for a bunch of different reasons, but I think for most, it's not the answer. I really think we just don't understand enough about the GI tract and the human body yet.

[plumbago]

Footnote No. 1 was a link to the University of Chicago Celiac site. Nothing specific on a study.

No. 2 -

Duodenal biopsies at diagnosis were classified as Marsh I in 11, II in 25 and III in 429 cases. After a median 16 months GFD, 38 (8%) patients had histological 'normalization', 300 (65%) had 'remission' with persistent intraepithelial lymphocytosis, 121(26%) had 'no change' and 6 (1%) had 'deterioration'.

16 months.

Link no. 3

Of 381 adults with biopsy-proven celiac disease, 241 (73% females) had both a diagnostic and follow-up biopsy available for re-review. Among these 241, the Kaplan-Meier rate of confirmed mucosal recovery at 2 years following diagnosis was 34% (95% CI: 27%

[Skylark]

The one I thought was interesting was Fasano's paper showing that zonulin does not normalize. There is also a paper I'm not sure was cited showing that the intestinal mucosa is still different in gluten-free celiacs. Open Original Shared Link The Medina et. al. link you said you don't have the knowledge to comment on is one of the growing body of literature that celiacs have intestinal dysbiosis. Basically, there seem to be fundamental differences in the intestines of people with celiac that are not reversed by the diet.

Many people still experience symptomatic recovery, but some do not. We cite this paper on the board all the time, where a substantial number of people who were gluten-free for 5 years or more still did not recover. Open Original Shared Link

[tom]

...

Many people still experience symptomatic recovery, but some do not. We cite this paper on the board all the time, where a substantial number of people who were gluten-free for 5 years or more still did not recover. Open Original Shared Link

Seeing " Poor compliance to GFD (P<0.01),... strongly associated with persistent mucosal damage" in the Results section makes me consider that their definition of a GFD isn't quite the same as mine, as if it's a just prescribed goal & a patient who 'tries REALLY hard' is on a GFD, whereas I might say some of them are on a 99% GFD or maybe even only a gluten-lite diet.

When a study's goal is to measure effects of a GFD, "poor compliance" to a GFD should remove the test subjects from the study, unless making the tragic compromise that the GFD requirement is satisfied by just making some effort, as opposed to actually BEING 100% gluten-free.

I know 100% isn't easy, but it's gotta be done for the duration of a study or you get "poor compliance" mucking up your data.

You may as well study commute times & not throw out those w/ poor compliance to red lights.

[Skylark]

Seeing " Poor compliance to GFD (P<0.01),... strongly associated with persistent mucosal damage" in the Results section makes me consider that their definition of a GFD isn't quite the same as mine, as if it's a just prescribed goal & a patient who 'tries REALLY hard' is on a GFD, whereas I might say some of them are on a 99% GFD or maybe even only a gluten-lite diet.

When a study's goal is to measure effects of a GFD, "poor compliance" to a GFD should remove the test subjects from the study, unless making the tragic compromise that the GFD requirement is satisfied by just making some effort, as opposed to actually BEING 100% gluten-free.

I know 100% isn't easy, but it's gotta be done for the duration of a study or you get "poor compliance" mucking up your data.

You may as well study commute times & not throw out those w/ poor compliance to red lights.

The authors addressed dietary compliance and looked separately at the group that was eating gluten-free and not cheating.

"However, the fact that only 67 (43%) of 156 patients with good adherence to a GFD, as determined by the dietitian interview, achieved mucosal recovery suggests that occult gluten sources (either cross-contamination or inadvertent gluten ingestion that are difficult to identify) or other yet unknown factors (e.g., genetics, age-related, duration of gluten exposure before treatment) may play a role in persistence of mucosal injury in adults with treated celiac disease." [emphasis mine]

As far as I can tell, that 43% number is across the whole study and does count recoveries at >5 years as well as the first biopsy. Another interesting thing about this study is that many of the people with damage on biopsy are asymptomatic.

[tom]

The authors addressed dietary compliance and looked separately at the group that was eating gluten-free and not cheating.

"However, the fact that only 67 (43%) of 156 patients with good adherence to a GFD, as determined by the dietitian interview,...

Ahhh good, I thought, until going back wishing I could read more than the abstract & then wishing I'd wished for something better, since I COULD see the full text for this one!

Anyway, a closer look still finds issues w/ whether a truly 100% gluten-free celiac is represented in the data.

The dietician's assessment gives each subject 1 of 5 grades:

" 1 = no evidence of gluten ingestion, 2 = rarely non-compliant, 3 = occasionally non-compliant, 4 = intermittently non-compliant and 5 = non-compliant. Using the previous scale, compliance to the GFD was summarized as follows: good (grades 1 or 2), moderate (grade 3), and poor (grades 4 or 5)."

Including grade 2 in the "good compliance" group is inconsistent w/ the stated Objective of the study.

I'm particulary sensitive to this as someone who in the 90s, before I knew better, WAS "rarely non-compliant" & got a hell of lot worse before going 100% gluten-free.

I understand that sometimes compromises must be made in real experiments - I do it at work all the time.

1st thought is that if there weren't enough grade 1 compliance subjects to have any statistical significance, the choices are to just abandon the study or regroup the subjects. I'm not saying that's what happened, just that there are valid scenarios where experiments/studies are less valuable than the designers hoped or expected.

Did I miss a breakdown of grade 1 vs grade 2?

Also, I was surprised to see in the Discussion section,

".... . ....might be some factors that explain discrepancies in rate of mucosal recovery after treatment with a GFD among United States and countries with excellent rates of mucosal recovery in adults such as Finland. 48, 49 13, 46, 50"

Haven't gone to the footnotes links yet, but it's pretty relevant that other studies had excellent rates of mucosal recovery.

[Skylark]

No, I don't see any 1 vs. 2 breakdown and you make a great point about the compliance scale. It's hard to know what really happened too, because the provided tables don't cross-tabulate the compliance scores against recovery. The other problem is that people lie like crazy about what they eat in studies so compliance scores are not going to be terribly accurate. They do not justify lumping 1 & 2 at all, although some of the studies they reference also use a 3-level scale so perhaps that is why they did it.

The thing I find really interesting about this study is that it's a good long-term retrospective snapshot of people walking through a major celiac clinic. Some recover, some kind-of recover, some are off the diet and don't get well, and a few seem to still have villous atrophy despite trying to stick to the diet.

[Lori2]

Too few people have a good idea of what constitutes a gluten-free diet. I have a number of relatives who have tried a "gluten-free" diet for several months without any positive results. For example--a brother-in-law, who was told he shouldn't eat wheat--so instead he ate potato bread. A daughter who made a casserole--but it was OK, it only had a tablespoon of flour in it. The heated dip that was OK if you just avoided the toasted crumbs on top. Their version of a gluten-free diet.

[IrishHeart]

Too few people have a good idea of what constitutes a gluten-free diet. I have a number of relatives who have tried a "gluten-free" diet for several months without any positive results. For example--a brother-in-law, who was told he shouldn't eat wheat--so instead he ate potato bread. A daughter who made a casserole--but it was OK, it only had a tablespoon of flour in it. The heated dip that was OK if you just avoided the toasted crumbs on top. Their version of a gluten-free diet.

All I can say is:

"Dietary compliance" has a very specific meaning to me and comes with expectations.

I, too, wonder how many people are as "good" at it as they claim.

[JustNana]

Skylark

I was diagnosed with Hashimoto's last month. Would you mind sharing your labs? I don't know anyone else with autoimmune hypothyroidism. My TSH was just under 6. FT4 was low normal. FT3 was extremely low. .93 with range of 2.4-5.2.

Are you taking any T3 or just T4?

I am so glad I found all of you.