Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Best Leaky Gut Healing Diet To Follow


Emilem

Recommended Posts

jerseyangel Proficient

JERSEYANGEL -

Just curious, were you able to figure out why you were having a problem with the chicken?

No, not specifically. I think that, as happens sometimes, I was reacting to a lot of things while my gut was still damaged and trying to heal.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Highflyer Newbie

The operative word is "management" . Not cure.

Until the connection to gluten was discovered by doctors in the Netherlands after World War II, no one really knew what sparked the autoimmune response.

I think it was 1952, unfortunately there is so much more to learn about this disease and we, along with millions of others, are proof that the conventional treatment for Celiac Disease is grossly inadequate. The current conventional treatment for Celiac is antiquated and ineffective long term...There is a real need for more research to be done.

To say adopting the SCD diet after a celiac diagnosis will "cure" celiac disease is simply not true.

Does the SCD help alleviate more symptoms for many people? YES!

And people should try it if they wish to see if it will help.

I am not arguing this point with you at all.

Phew...that's a relief. ;) I think it's likely a very individual thing...some claim they are cured.

I hope you see the distinction I am trying to make here.

Best wishes to you!

Indeed I do!

Clearly there is so much more to be learned about this disease. I'm not sure I actually said "I" believe the SCDiet will cure Celiac, but that Dr. Haas was known in his day as having discovered a cure. The banana diet is fun to read about. In the end the SCDiet was what he concluded was resolving his patients intestinal issues, bananas were not a big part of it, except that eating very ripe ones is on the allowable food list. Elaine Gottshall gives a very good explanation of the science behind why his diet works in her book Breaking the Vicious Cycle.

I wish my drs over the years had been better equipped to instruct me in the area of diet...most of us are left on our own devices to figure it out. So it's a relief to have some practical advice with scientific backing.

Let's not be naive about the popularization of certain kinds of treatments. The gluten-free food industry is a good example of that...over priced packaged foods, many of which could be classified 'junk food'...it's a total money grab. I'm leary of any 'remedy' that is a marketing scheme.

For me personally Celiac disease was not the first autoimmune disease I developed, which I'm more and more convinced was caused by leaky gut syndrome...(but where did the leaky gut come from? did gluten cause the leaky gut or did the leaky gut cause celiac disease?---I lean strongly toward the latter explanation.) The remedy for leaky gut is starving off pathogens with special diet and other means and rebuilding healthy intestinal flora with probiotics. Doing this seems (for me personally) to be reversing all my autoimmune diseases...slooowly. Others have experienced the same thing.

(We seem to have more than one train of thought happening in this thread and I apologize to the original poster if this is veering off into outer space. We could move it elsewhere.)

IrishHeart Veteran

I do not think it has gone so terribly off topic at all. The discussion of various approaches to healing a leaky gut is very much on topic.

But, the link you posted to---does indeed say the SCD diet cures it--along with this

"Curing celiac disease depends on repopulating the intestinal tract with helpful flora microbes."

While I agree probiotics are necessary to repopulate the good gut flora,

I do not see how this is a "cure" for celiac. It is part of the treatment in getting the symptoms under control.

Everyone should do what they feel is best to feel well.

Kind regards.

kareng Grand Master

I think there is a difference between "curing Celiac" and "healing from Celiac". These diets, probiotics, etc can help you "heal" but they are not a "cure". There is no reputable medical/scientific data that a Celiac can go back to eating gluten with no ill effects once thier gut is healed.

jerseyangel Proficient

Exactly--there is currently no cure for Celiac Disease. There are things people can do to help with or even eliminate the symptoms of the disease, but the underlying cause will always be there.

GottaSki Mentor

Yep...no cure and many different dietary changes and combos of supplementation can produce results for many -- the key with all is removing all gluten first, then make any other changes needed to help the damaged small intestine heal and stay healed!

Highflyer Newbie

I think were haggling over words. Healed vs. Cured. I guess for me cure is defined by evidence. I have arthritis and if my body no longer showed evidence of the disease I would consider myself cured of it. I have a skin disorder that is healing itself...once I have fully recovered from it I will consider myself cured. Likewise, Dr. Haas had patients who were symptom free after returning to a regular diet, which he and they considered evidence of a cure. I think it's a fabulous bit of information worth looking into. If I ever get to the point where I feel my body is healed and I can resume a diet that is healthy (which would be far from the typical american diet btw) I would also consider myself cured of the disease. Ha...hasn't happened yet! I agree with you all who say 'there is no cure' but I would qualify it by saying, "To date conventional western medicine has not recognized a cure for celiac disease"...however that doesn't mean there is no cure for it, or that it is incurable.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



GottaSki Mentor

Perhaps we are haggling over words, but the words we choose to use on this forum are important as there are many newly diagnosed individuals who read "cure" which leads to more confusion during an often very confusing transition.

In my opinion:

"Cured" would mean someone with Celiac Disease would both heal and be able to safely ingest gluten for life.

"Healed" means health has been restored by healing the damaged small intestine. Often this requires removing more than gluten - while it is possible to get some food intolerances back into the diet - for Celiac Disease gluten can never be ingested safely - well at least until our friends down under work the kinks out of theiir vaccine research.

ndw3363 Contributor

Yes, but I think the point some are trying to make is that just because patients felt "symptom free" doesn't mean they weren't redoing all the damage to their systems. Once completely healed, I'm sure plenty of people could go back to eating whatever they wanted with no symptoms...however, months or years down the road, they would be right back to where they started or worse. Patients felt better because they stopped eating the offending foods and healed their systems. That's like drinking small amounts of poison every day and feeling terrible...stop drinking it and you will miraculously feel "cured". Just my opinion. I had a skin condition too that is HEALED since going gluten-free. However, it is not CURED because if I were to go back to eating that way everyday, my skin condition would return.

jerseyangel Proficient

I think were haggling over words. Healed vs. Cured. I guess for me cure is defined by evidence. I have arthritis and if my body no longer showed evidence of the disease I would consider myself cured of it. I have a skin disorder that is healing itself...once I have fully recovered from it I will consider myself cured. Likewise, Dr. Haas had patients who were symptom free after returning to a regular diet, which he and they considered etevidence of a cure. I think it's a fabulous bit of information worth looking into. If I ever get to the point where I feel my body is healed and I can resume a diet that is healthy (which would be far from the typical american diet btw) I would also consider myself cured of the disease. Ha...hasn't happened yet! I agree with you all who say 'there is no cure' but I would qualify it by saying, "To date conventional western medicine has not recognized a cure for celiac disease"...however that doesn't mean there is no cure for it, or that it is incurable.

Celiac is an autoimmune disease. No matter how well you get yourself feeling--which is totally possible--the disease itself is still there. I feel perfectly normal unless I get accidentally cross contaminated. Took years to get to this point, though, and I would never consider relaxing the "no gluten ever" rule.

Plus, with Celiac, symptom intensity does not necessarily correlate with damage.

You have a right to eat whatever you want, but Celiac at this point can't be cured--there is a lot we still don't know about the disease, but this we do know for sure.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    2. - knitty kitty replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    3. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    4. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,259
    • Most Online (within 30 mins)
      7,748

    Tdodge
    Newest Member
    Tdodge
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • suek54
      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later.  The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied, no chance if recovery there. But I am in touch with some secondaries, so something to bear in mind. .  Niacin B3 Very interesting too. Must have a good read about that.  Im sure lots of questions will arise as I progress with dermatitis herpetiformis. In the mean time, thanks for your help.
    • knitty kitty
      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
    • suek54
      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.