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

Emilem Apprentice

I am a celiac currently dealing with multiple food intolerances. I have done quite a bit of research, and am t rying to find the best leaky gut healing diet to follow.

From what I can gather, I should stick to mainly:

Unprocessed meats & fish (chicken, turkey, beef)

Low Starch Vegetables

Healthy Oils

I am not sure about fruit, as the high sugar ones tend to bother me from time to time.

Additionally, squash seems to bother me (wondering if it is because the high starch content)

Coconut is supposed to be a gut healing food, however, I tend to negatively react to it.

Looking for any suggestions from people who have tried things that work!!!

Thanks!


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



Celiac.com Sponsor (A8-M):



GottaSki Mentor

The problem is none of us is exactly the same. It seems you have a good handle on what foods bother you. Start there and adapt to the research you have done. You seem to be on the right track to me.

Jrose3009 Newbie

From what I was told and am currently trying is a rotation diet.. and yes it starting to work as I am now able to tolerate more foods than I could when I started. (Which is not good for me bc i tend to go overboard on them knowing there all I can eat) Anyways high starch anything is bad when dealing with leaky gut. I recommed lean meats lots of salmon some low sugar high antioxident fruits, RAW veggies very important even if you have to juice them and lots of garlic.. as for supplements I go for aloe vera juice, (thats what first stared fixing my gut) garlic, onions, a good vitamin gluten free of course i recommend "deva vegan multivitamins" (i just take a half one a day its packed full of veggies too like spinach) , vitamin c is good, slippery elm and marshmellow root (have not tried yet) and keifer or a strong organic yogurt once a day diet will thicken the gut over time we just have to heal it. I know someone who fully was healed in 60 days by eating plain chicken and fish everyday for 2 months by the end of the 3rd month he could eat anything he wanted w no ill effects but remained gluten free anyway bc he felt better on it.. good luck also look into the paleo diet and auto-immune paleo.

rosetapper23 Explorer

Everyone is different, but for many people the paleo/primal diet seems to work well. You might visit marksdailyapple.com--great recipes and advice.

Chaff Explorer

I can't eat anything on the Paleo diet, the GAPS diet, or SCD. All I can handle is polenta and white rice (soaked for 24 hours or more), plain tuna or salmon, prunes, almond milk, ginger tea, a 1/2 cup or less of avocado and only trace amounts of anything else. Oh, and wine and gluten-free cookies, for some reason.

I'm looking to expand the list, but for now this is what I've got. Basically -- find a few safe foods and expand from there. My rule is not to exclude anything if it doesn't give me trouble just because someone said it shouldn't work.

Persei V. Enthusiast

I can't eat anything on the Paleo diet, the GAPS diet, or SCD. All I can handle is polenta and white rice (soaked for 24 hours or more), plain tuna or salmon, prunes, almond milk, ginger tea, a 1/2 cup or less of avocado and only trace amounts of anything else. Oh, and wine and gluten-free cookies, for some reason.

I'm looking to expand the list, but for now this is what I've got. Basically -- find a few safe foods and expand from there. My rule is not to exclude anything if it doesn't give me trouble just because someone said it shouldn't work.

This.

It doesn't mean you shouldn't be aware of things that might cause troubles, but I for one, can have starchy vegetables and spicy foods without a problem, while I can't have honey when people seldom have problems with it. Just try not to get overexposed to anything and stick to the foods you can eat and soon you'll be doing great and adding more foods.

LeakyGutRsrch Newbie

What worked for me was

1. zero gluten

2. zero alcohol

3. zero eggs

4. zero milk

5. fasting

6. vitamin D 2x week 5 min sunbed


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



Celiac.com Sponsor (A8-M):



Highflyer Newbie

Oh, and wine and gluten-free cookies, for some reason.

I personally think that's an awesome plan right there...lol...course I'm kidding.

The topic is 'best leaky gut diet'. I personally believe that leaky gut syndrome underlies almost all gut issues as well as a number of other autoimmune diseases. What's worked best for me in combination with an scd diet (please never assume you can eat everything on any list--our internal ecosystem is unique to each of us and some foods work for some and not for others) is probiotic foods...not the pills in a bottle, although they can be helpful too but are inordinately expensive and low in probiotic power in comparison to homemade probiotics. Let me explain.

I have had celiac disease for many years (over 20). A gluten-free df diet helped for a while but my health never really turned around, I just maintained a degree of ill health and was managing for many of those years. Then I had over exposure to extreme stress emotionally/psychologically plus was in an environment that was gluten infested (and didn't know it)...airborne gluten btw. This turned things for the worse, I had some improvements and got out of a stressful marriage which helped some, but a year ago my entire body was descending into hell (pardon the expression but seriously!). I had some exposure to mold and bacteria in water that I think tipped things over for me. Let's just say I developed a very intimate relationship with the bathroom.

Long story short...after a year on a diet that was grain free, dairy free, sugar free, and with many other food intolerances eliminated, I lost inordinate amts of weight but my health started to turn around...even was seeing another autoimmune disease improve. I ate mostly fish, poultry and veggies that were low carb as well as lots of coconut oil and olive oil. I was taking a small amt of probiotics as well...mostly from a bottle and some other supplements to heal the gut ie. l-glutamine, gelatin.

I reintroduced decaf coffee which in case you aren't aware coffee has a protein in it that is similar to gluten and many people with celiac react to it in the same way they react to gluten. I think the coffee made me relapse...after a month or two of the coffee my body was going backwards fast and digestion just stopped happening. I didn't connect it to the coffee until I read about the cross reaction with gluten.

Zoom ahead...less than two months later (took about a month to see a big turn around) on an SCD diet (important) and large doses (i built up to this) of homemade probiotics, I can eat many things I was intolerant to a few months ago, my intestinal tract feels and acts normally (the first time in 20 yrs???) and I can feel my body regaining strength by the day. I am convinced that it is the probiotics that are the key, but the diet is also an essential part of it. Why?

My theory, and it's substantiated medically, most gut issues and many other health problems are the result of opportunist pathogenic invaders, ie. yeasts, parasites, molds, bad bacteria overgrowths, etc.

The SCD--Specific Carbohydrate Diet (GAPS is build on it) was designed by a Dr. Haas a famous NY Dr who is known for curing Celiac Disease...he worked for 50 yrs with patients (was a pediatric doctor who worked with celiac patients). He was still actively working in his 90's. Wrote a book called Management of Celiac Disease that was published in the early 50's(?). He advocated eating a special lactose free (homemade) yogurt along with the diet which together starved the pathogens and over time (1-2 yrs) many of his patients were able to return to a more varied healthy diet and be fine. Elaine Gottshall the author of the SCD book Breaking the Vicious Cycle, went to him with her young daughter 8 yrs old who was literally dying of Crohns disease...they were ready for radical surgery when she found this dr. and his diet cured her...the dd is still around today and living a healthy life. Elaine carried on Dr. Haas' (and his son Dr. Haas) diet and spent 12 yrs researching why it worked...she is a biochemist. Then she devoted the remainder of her life to helping people get well. She died in 2005.

I am using homemade milk kefir (just started this today), water kefir, kombucha tea, yogurt and I'm experimenting with fermenting veggies.(You don't have to do all of these things...many people do fine on one good homemade probiotic like yogurt or kefir. After 23 yrs of ill health, with more than 10 yrs of extreme limitations and bodily dysfunction (living on disability and practically being a recluse) I'm starting to feel like 'normal' and 'functional' might again be words that describe my life. Diet alone won't do it, the probiotics are absolutely essential, and stress-reduction, exercise, etc. of course all play a part as well.

Books I have read: lots on celiac disease that were not all that helpful over the years (I was a religious adherant to the gluten-free diet), The Leaky Gut Cure Karen Brimeyer...very helpful (still following her diet with a few minor moderations), Listen to Your Gut by Jini Patel Thompson...very indepth and helpful...still reading it, Breaking the Vicious Cycle by Elaine Gottshall...essential for everyone to read...I'm following this diet currently, some books on Paleo diet, which is similar, The Healthy Urban Kitchen...great information and good recipes (not all fit my diet), Sally Fallon Nourishing Traditions, and want to read Body Ecology Diet. I would really like to read Dr. Haas' book but it's out of print and expensive to buy used. I'm a little irate that there was a medical Dr who found a cure for Celiac but his work is largely ignored in the medical arena and still today most doctors are oblivious. It seems if there is not a prescription medication to give you they don't know what to do with you. On the other hand, a 3 min call with a naturopathic dr. got me researching leaky gut syndrome and lead me to the answer.

Sorry this is so long but I wanted to share what has worked for me.

sa1937 Community Regular

I'm glad the SCD diet worked for you. But please, there is NO CURE for celiac disease. If there was, there'd be hundreds, if not thousands, of us standing in line and all the celiac organizations would be shouting it from the rooftops. We need to remain gluten-free for life.

Plain coffee is gluten-free unless flavorings have been added to it that are not and I've never heard of coffee having a protein in it similar to gluten. Perhaps you could provide a link to substantiate your point. That said, a number of celiacs do have a problem with coffee for one reason or another and choose not to drink it.

Highflyer Newbie

You are right coffee does not have gluten in it...it has a protein that is similar to gluten protein and for many with Celiac Disease it causes problems...I'm apparently one of them. For me it was a factor.

In 1952 the mainstream of medicine took the approach that gluten protein alone was the problem underlying celiac disease but the problem is more complex than that, prior to that...

Dr. Haas treated over 600 cases of celiac disease with his Specific Carbohydrate Diet, maintaining his patients on it for at least twelve months, and found that the prognosis of celiac disease was excellent. "There is complete recovery with no relapses, no deaths, no crisis, no pulmonary involvement and no stunting of growth."

In 1951, Dr. Haas, together with his son, Dr, Merrill P. Haas, published The Management of Celiac Disease, the most comprehensive medical text that had ever been written on celiac disease. With 670 references to published research, the book described celiac disease more completely than had ever been done before.

Fortunately this information is now available and more and more people are finding they are healing from more than just celiac disease on this diet.

A copy of Dr Haas book can be purchased at amazon Open Original Shared Link.

Another good link that explains things much better than I can is found Open Original Shared Link. There is so much more info online if you start to search. I figure we owe it to ourselves to be informed as much as we can.

Highflyer Newbie

Forgot to add the link about coffee cross reacting ... Open Original Shared Link

IrishHeart Veteran

I'm a little irate that there was a medical Dr who found a cure for Celiac but his work is largely ignored in the medical arena and still today most doctors are oblivious.

There is no "cure" for Celiac Disease.

If there were a cure, it would be front page news. And we'd all be dancing in the streets.

Can someone heal a ravaged and leaky gut? Sure, but you still have Celiac Disease and you should never, ever ingest gluten again--or you will spark the autoimmune response once again.

As for the myth that "coffee cross-reacts with gluten"? Sorry, there is no scientific evidence for that--and again, the celiac centers would tell celiacs "do not drink coffee". if it were harmful in any way.

I'd be dead by now if it were the case.

Some people find it abrasive to the gut, but that could be because they are not healed.

As for people who suggest raw veggies and juicing fruits and veggies....well, some celiacs also have secondary fructose malabsorption (as I have) and we cannot possibly tolerate that large concentration of fructose. I lost everything both ways after drinking juiced produce and had horrible stomach cramping. Why did I even try it? Someone said it would miraculously heal my gut and I was willing to try anything to get out of the pain I was in.

Not everyone can follow a strict diet--whether is it SCD, GAPS, Paleo, primal, or any other exclusionary diet.

Raw kefir may create explosive diarrhea in some people who are also not healed enough.

And no celiac who has been malabsorbing nutrients and suffering from malnutrion and various deficiencies should ever fast.

Your body was in starvation mode before diagnosis. You need to eat.

Bone broths are rich in collagen and gelatin and have various beneficial effects on gut healing and immunity. They can provide a cheaper and better way to help seal the gut than any number of supplements.

This is something that an individual figures out based on their reactions, not on what someone else says is "the best".

IrishHeart Veteran

Forgot to add the link about coffee cross reacting ... Open Original Shared Link

This is a chiropractor's blog.

He is basing this theory on nothing scientific.

No published data to support this theory

We have discussed this topic ad nauseum on here and unfortunately, there's nothing published and peer-reviewed that proves that the protein in coffee and the protein in gluten "cross-react".

Highflyer Newbie

There is no "cure" for Celiac Disease.

If there were a cure, it would be front page news. And we'd all be dancing in the streets.

Can someone heal a ravaged and leaky gut? Sure, but you still have Celiac Disease and you should never, ever ingest gluten again--or you will spark the autoimmune response once again.

Well apparently it worked for Dr. Haas' patients...and those who continue in that kind of treatment today. I offer the information for those who are interested in researching it for themselves, not to start an argument.

As for the myth that "coffee cross-reacts with gluten"? Sorry, there is no scientific evidence for that--and again, the celiac centers would tell celiacs "do not drink coffee". if it were harmful in any way.

I'd be dead by now if it were the case.

Some people find it abrasive to the gut, but that could be because they are not healed.

I was offering that as an explanation for my relapse, and for me personally coffee is not good. Others clearly are not bothered by it. I happen to respect the views of doctors of various disciplines and personally have been helped more by those who are not MD's.

As for people who suggest raw veggies and juicing fruits and veggies....well, some celiacs also have secondary fructose malabsorption (as I have) and we cannot possibly tolerate that large concentration of fructose. I lost everything both ways after drinking juiced produce and had horrible stomach cramping. Why did I even try it? Someone said it would miraculously heal my gut and I was willing to try anything to get out of the pain I was in.

I'm sorry you had to go through that. I've mostly read that raw foods are hard on the intestinal tract and should be avoided until things are healed up. It is important to research and discern. I find the best sources of information come from those with the diseases I have who have been successful in finding ways to heal..and have stayed healed long term. All of the resources I mention in my post were written by people with first hand experience with healing themselves. To me that gives them credibility.

Not everyone can follow a strict diet--whether is it SCD, GAPS, Paleo, primal, or any other exclusionary diet.

Not sure what you mean by this but first you have to be convinced it's what you want to do to try to get well...for me it's not hard to make dietary changes, but I'm very motivated to have a life and this is giving me my life back...so I willing go out on limbs. I'm not saying anyone should jump on the bandwagon with me, just offering up my experience and some resources to look at if you want to.

Raw kefir may create explosive diarrhea in some people who are also not healed enough.

Yes, any probiotics need to be started slowly. They create a little war in there for a few days trying to get rid of the bad guys. ;)

And no celiac who has been malabsorbing nutrients and suffering from malnutrion and various deficiencies should ever fast.

Your body was in starvation mode before diagnosis. You need to eat.

I agree...fasting isn't something that I've ever seen anyone advocate for healing this stuff.

Bone broths are rich in collagen and gelatin and have various beneficial effects on gut healing and immunity. They can provide a cheaper and better way to help seal the gut than any number of supplements.

Yes! Bone broths are very good and I try to have them often. Always better to take real food than supplements. One of the things I appreciate most about the SCD diet...no pushing supplements of any sort...just healthy diet specifically geared toward healing.

This is something that an individual figures out based on their reactions, not on what someone else says is "the best".

Entirely true and this is part of what I've done with the advice I've received...not all the foods on the scd diet list work for everyone...you fine tune it to what your body can handle.

Highflyer Newbie

This is a chiropractor's blog.

He is basing this theory on nothing scientific.

No published data to support this theory

We have discussed this topic ad nauseum on here and unfortunately, there's nothing published and peer-reviewed that proves that the protein in coffee and the protein in gluten "cross-react".

Ya, there's likely more to it than what this guy is saying...I think he's only got part of the story on the cross reacting stuff, but for me reading this was confirmation that coffee causes me problems and this might be the reason way.

Highflyer Newbie

I forgot to mention I have been gluten free since 1998...will stay that way for life likely, but then who knows...I will continue to read about the experiences of others who have walked this path before I decide to retry it. I was also dairy free for 25 yrs and am now tolerating and thriving on certain kinds of dairy.

Remember I'm sharing my experience...not trying to convince anyone of anything...just answering the topic of the thread...what has worked for me.

Emilem Apprentice

What are your thoughts on Kefir?? I buy the plain kind, 99% lactose free - but I'm not sure If I will be able to tolerate it right now......?

Highflyer Newbie

I haven't tried store bought kefir. It's very easy to make at home if you are into that sort of thing and want to know more about that there are youtube videos and many places to buy the starter online.

I've been advised to start slow on any probiotics. (I can tolerate as much as I want now and feel great on them). Start with a tablespoon/day and see how your body responds to it. If you do ok on that amt for a few days, then increase the amount and keep going till you are at your desired amount. You can take a cup or two a day once your body adjusts.

When you start on probiotics of any sort it's important to start slow and build up to more. What happens is the probiotics (good bacteria) go to war with the bad bacteria in your system and you can have some side effects for a short time as your body adjusts, ie. gas, diarrhea. If that happens it just means the probiotics are eliminating bad guys...which is a good thing. I like to add kefir to my smoothies, and have taken water kefir (the non dairy version) for a while now...just started on the milk version and have no problems with it so far...had two cups of it today.

Chaff Explorer

I think we're all trying to figure this out as best we can, but at the end of the day we don't have robust science to give us clear answers. We have a lot of data, some of which are scientific observations, and most of which are anecdotal evidence. The best we can do is to try out a lot of things and see what works for us, and then write about it here, so that other people can get ideas. I find it especially helpful when people say their symptoms and the foods they can/can't handle -- then I can see who fits my problem the best, and hope that what worked for them will work for me.

I'm fermenting stuff like crazy (kefir grains coming to me on the slow mail barge), living off homemade pickles and sauerkraut, eating whatever I can. Which is exactly ten foods. I'm trying a new one today -- lean cold-cut chicken. And tomorrow, wild Pacific smoked salmon. There are worse problems than having to sample various meats. :)

Still, though, I would love to try these miracle diets. People rave about the SCD, GAPS, and Paleo stuff. But the basic SCD diet makes me ill, and the only starches I can handle are rice and corn and for protein, only fish, and that in tiny quantities (fructose/saturated fat/everything malabsorbtion + mercury dangers). Did I mention I hate fish?

The most serious problem here is that these are ketogenic diets. I even wrote the SCD folks to ask about it and they insisted ketosis is unfairly maligned and is actually quite safe -- and that the diet needs to be ketogenic. But, I need calories. I need to eat. I've been starving myself my whole life -- now that I have a roadmap to health, I want to thrive for once. If that means eating grits for breakfast and meat-rice-avocado "sandwiches" for lunch every day, that's what I'll do.

Rats, now I'm reacting to the chicken. Oh well, let's see how the salmon does tomorrow...

Highflyer Newbie

Ya, SCDiet doesn't work for everyone, the author of the modern book on it was a biochemist who spent 12 years studying the science behind the diet. She says if you aren't improving after a month on the diet to discontinue. There are people who just don't respond well to it and you are clearly one of them.

I hope the kefir helps you and that you can find more foods that work...it's frustrating. Don't think I was ever down to 10 foods but close and I've eaten so much fish I should look like one. I was digesting virtually nothing for a time and living between my bed and the bathroom. There are some good supplements out there designed to heal the gut wall...I was on GI repair for a while. Have you tried anything like that?

IrishHeart Veteran

You are right coffee does not have gluten in it...it has a protein that is similar to gluten protein and for many with Celiac Disease it causes problems...I'm apparently one of them. For me it was a factor.

In 1952 the mainstream of medicine took the approach that gluten protein alone was the problem underlying celiac disease but the problem is more complex than that, prior to that...

Dr. Haas treated over 600 cases of celiac disease with his Specific Carbohydrate Diet, maintaining his patients on it for at least twelve months, and found that the prognosis of celiac disease was excellent. "There is complete recovery with no relapses, no deaths, no crisis, no pulmonary involvement and no stunting of growth."

In 1951, Dr. Haas, together with his son, Dr, Merrill P. Haas, published The Management of Celiac Disease, the most comprehensive medical text that had ever been written on celiac disease. With 670 references to published research, the book described celiac disease more completely than had ever been done before.

Fortunately this information is now available and more and more people are finding they are healing from more than just celiac disease on this diet.

A copy of Dr Haas book can be purchased at amazon Open Original Shared Link.

Another good link that explains things much better than I can is found Open Original Shared Link. There is so much more info online if you start to search. I figure we owe it to ourselves to be informed as much as we can.

Yes, I read about Dr. Haas' work years ago. He treated babies with failure to thrive and bloated bellies

-----with bananas.

Were all those babies celiacs?--who knows---maybe it was some other digestive issue?.

All malabsortion diseases were lumped together at one time as "coeliac" (i.e. wasting disease)

"In 1951, Dr. Sidney V. Haas and his son, Dr. Merrill P. Haas, published their book "Management of Celiac Disease," which detailed the doctors` years of success in using diet to cure various intestinal diseases including colitis and celiac disease. Dr. Haas`s approach was a groundbreaking approach to the management of intestinal disease."

The operative word is "management" . Not cure.

.

Some did not survive the banana regime.

But many doctors implemented this banana diet for babies with all sorts of digestive issues. They became known as the "banana babies" of the 30's, 40's and 50's. My cousin's wife was one. Some stayed in the hospital for as long as 9 months and then, continued to eat only bananas for a few more years.

Many of these children went on to reintroduce more carbs and then, resume a normal gluten-filled diet.

Some felt well for a while and some continued to have digestive issues their entire lives.

Whether they were true celiacs or not--was never established ---as there was no diagnostic criteria back then.

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.

The largest number of people currently being diagnosed with celiac are people over 50.

Many of them were banana babies who were told they could resume normal diets. This was a gross error, obviously.

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.

But to use the word "cure" is misleading. Once a celiac, always a celiac.

I would love to see a cure!! But the truth is, the SCD will not cure celiac disease..

It may help manage it better, yes.

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

Best wishes to you!

Emilem Apprentice

Anyone have problems with chicken???

kareng Grand Master

Anyone have problems with chicken???

Google chicken on this forum and you will find that some people do have problems with chicken.

jerseyangel Proficient

Anyone have problems with chicken???

I did when I first went gluten-free. I avoided it for a while, and was able to incorporate it back little by little.

Emilem Apprentice

JERSEYANGEL -

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

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. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    2. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    3. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    5. - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

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

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • 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.