Anyone completely grain-free? Just had super positive reaction and am curious if others have had similar experiences. (Also: is this really even celiac, with all the grains so intolerable??)

[Lizi]

Hello all - 

So glad to find these forums and read about your experience! I was diagnosed with celiac 13 years ago (I am currently 40, have had symptoms since I was a tiny kid). I got off the gluten then but was partying like a rockstar through grad school and was too cool to pay much attention to the diagnosis, and things were still quite bad, though the killer pains definitely lessened.

Recently I was prescribed antidepressants for lifelong depression, and they kicked up my appetite and helped me to eat more (a good thing, as I have always had what I call a "faulty hunger mechanism" -- I rarely feel hungry and know I'm hungry only when I start feeling sleepy). However, the increased food, all of which was gluten-free and some of which included a fair amount of gluten-free grains, as I was vegan, started causing more serious problems the last few years. 

I ended up with more painful exhausted flare-ups, but accidentally (bc I was too tired to go to the store!) ate grain-free a couple days in a row, as I had only potatoes in the house, haha. And WHAT!!! After a few days of that, I was still recovering for sure, but I woke up and my gut felt.... incredible. Like, it has never felt this good. 

It's been a couple weeks now. I am not able to eat healthfully as a vegan if I am grain-free, so I am not doing that anymore. No: soy, nuts, pseudograins, legumes, corn, rice -- each of these messes me up. Is this common with celiac? Is this even celiac, this crazy sensitivity to all of these things? Lupus has been suggested to me, but I am quite athletic (when I can be) and the sun doesn't seem to make me feel poorly.

I know you all are not here to diagnose, but your experience and thoughts are welcomed!!

thank you - 

Lizi 

 

 

[Scott Adams]

Welcome to the forum!

There is definitely a strong minority of those with celiac disease who also seem to do poorly whenever they eat any type of grain. Since you are also vegan this can pose extra challenges for you to get enough nutrients, so you may also want to take a good vitamin/mineral supplement.

I believe potatoes are one of the few vegetables that you can survive on for long periods, without eating other foods. Some people have issues with nightshades, and potatoes are in that group, but since you don't potatoes might be the best base for your grain-free diet. You may also want to consider sweet potatoes as well.

FYI: This article discusses nutrient deficiencies in more detail:

 

[trents]

Welcome to the forum, Lizi!

Have you looked into SIBO or candida infections?

[No more doughnuts]

Just now, Scott Adams said:

Welcome to the forum!

There is definitely a strong minority of those with celiac disease who also seem to do poorly whenever they eat any type of grain. Since you are also vegan this can pose extra challenges for you to get enough nutrients, so you may also want to take a good vitamin/mineral supplement.

I believe potatoes are one of the few vegetables that you can survive on for long periods, without eating other foods. Some people have issues with nightshades, and potatoes are in that group, but since you don't potatoes might be the best base for your grain-free diet. You may also want to consider sweet potatoes as well.

FYI: This article discusses nutrient deficiencies in more detail:

 

Hi Scott,

I absolutely stay away from grains. As far as potatoes, they are a big "no no".  They fall int the "night shade" family.  Night shades have lectins which are very harmful to people with autoimmune disease.  You can look up "The Plant Paradox" by Dr. Steven Gundry.  He explains in great detail on lectins are bad for our intestines.  You may eat "roots" like: yams, sweet potatoes, or taro.  I have been following his diet for 3 years now...no flare ups!  You may also google his "Yes and No List" of what is afe and what is not.

Just now, No more doughnuts said:

Hi Scott,

I absolutely stay away from grains. As far as potatoes, they are a big "no no".  They fall int the "night shade" family.  Night shades have lectins which are very harmful to people with autoimmune disease.  You can look up "The Plant Paradox" by Dr. Steven Gundry.  He explains in great detail on lectins are bad for our intestines.  You may eat "roots" like: yams, sweet potatoes, or taro.  I have been following his diet for 3 years now...no flare ups!  You may also google his "Yes and No List" of what is afe and what is not.

safe

[Scott Adams]

Just to clarify, potatoes are not a big "no no" for everyone. In this case the OP @Lizi seems to do quite well with potatoes, and given her dietary restrictions there is no need to avoid them if she has no issues with them. I eat potatoes, tomatoes and chili peppers almost daily, and have zero issues with them.

[No more doughnuts]

5 minutes ago, Scott Adams said:

Just to clarify, potatoes are not a big "no no" for everyone. In this case the OP @Lizi seems to do quite well with potatoes, and given her dietary restrictions there is no need to avoid them if she has no issues with them. I eat potatoes, tomatoes and chili peppers almost daily, and have zero issues with them.

Some people are "gluten sensitive" and others who have celiac disease and DH react differently.  I thought I had no problems with potatoes for years actually.  Until my skin burst out with huge blistery welts years later.  But, 

every person is different.  Same thing with tomatoes and chili peppers. Glad you have no problem with them.

[Lizi]

19 hours ago, trents said:

Welcome to the forum, Lizi!

Have you looked into SIBO or candida infections?

Thank you, trents!

I have not recently, but I did also get diagnosed with candida when I was first diagnosed with celiac 13 years ago. I also had it on and off throughout childhood. I haven't felt like I've had once since I went gluten-free, but who knows? And I've heard of SIBO but not looked into it. 

What is the usual process for getting diagnosed with these things? (I am in the US.)

[trents]

7 minutes ago, Lizi said:

Thank you, trents!

I have not recently, but I did also get diagnosed with candida when I was first diagnosed with celiac 13 years ago. I also had it on and off throughout childhood. I haven't felt like I've had once since I went gluten-free, but who knows? And I've heard of SIBO but not looked into it. 

What is the usual process for getting diagnosed with these things? (I am in the US.)

https://www.medicinenet.com/what_are_the_symptoms_of_candida_in_the_gut/article.htm

https://www.mayoclinic.org/diseases-conditions/small-intestinal-bacterial-overgrowth/symptoms-causes/syc-20370168

What made me think of these two possibilities is that by eliminating all grains you have also likely eliminated most of the carbs in your diet.

Edited April 19, 2023 by trents

[Lizi]

19 hours ago, Scott Adams said:

Welcome to the forum!

There is definitely a strong minority of those with celiac disease who also seem to do poorly whenever they eat any type of grain. Since you are also vegan this can pose extra challenges for you to get enough nutrients, so you may also want to take a good vitamin/mineral supplement.

I believe potatoes are one of the few vegetables that you can survive on for long periods, without eating other foods. Some people have issues with nightshades, and potatoes are in that group, but since you don't potatoes might be the best base for your grain-free diet. You may also want to consider sweet potatoes as well.

FYI: This article discusses nutrient deficiencies in more detail:

 

Thank you, Scott! That is very helpful, as is the link. Much appreciated!

[Lizi]

17 hours ago, No more doughnuts said:

Some people are "gluten sensitive" and others who have celiac disease and DH react differently.  I thought I had no problems with potatoes for years actually.  Until my skin burst out with huge blistery welts years later.  But, 

every person is different.  Same thing with tomatoes and chili peppers. Glad you have no problem with them.

Interesting! Yes, I have had dances with nightshades too, haha. I don't normally eat white potatoes very often, which is why they were the only thing in the house! I find if I keep them in moderation they are ok for me, so far at least. They are definitely not yet at grain-level toxic for me.

But yes, I prefer sweet potatoes, yams, and squashes.  

[knitty kitty]

@Lizi,

Yes, a diet that eliminates all grains, pseudo grains, legumes, seeds and nuts is the Autoimmune Protocol Diet.  Our gastrointestinal symptoms get a chance to rest, recuperate, and repair itself if we eliminate those foods for several months.  

The AIP diet has really helped me.  A benefit has been that my SIBO is gone.  SIBO is the overgrowth of carb-loving bacteria grow into the small intestine causing bloating and gas and making us miserable.  They get starved out, and beneficial bacteria take over.  This diet helps me keep my blood glucose levels in control with Type Two Diabetes.  I also take 500 mg/day Thiamine in the form Benfotiamine (TTFD -Tetrahydrofurfuryl disulfide) which helps heal the small intestines.  (An early symptom of insufficient thiamine in the diet is loss of appetite and depression.)  Tryptophan supplements, a form of Niacin that is needed to make those feel good neurotransmitters, help heal the intestines and along with Vitamin D, improves depression as well.  

Nutritional deficiencies can occur on gluten free diet.  Check with your doctor about supplementing while you are healing.  

 

Edited April 27, 2023 by knitty kitty
Typo

[Lizi]

14 hours ago, knitty kitty said:

@Lizi,

Yes, a diet that eliminates all grains, pseudo grains, legumes, seeds and nuts is the Autoimmune Protocol Diet.  Our gastrointestinal symptoms get a chance to rest, recuperate, and repair itself if we eliminate those foods for several months.  

The AIP diet has really helped me.  A benefit has been that my SIBO is gone.  SIBO is the overgrowth of carb-loving bacteria grow into the small intestine causing bloating and gas and making us miserable.  They get starved out, and beneficial bacteria take over.  This diet helps me keep my blood glucose levels in control with Type Two Diabetes.  I also take 500 mg/day Thiamine in the form Benfotiamine (TTFD -Tetrahydrofurfuryl disulfide) which helps heal the small intestines.  (An early symptom of insufficient thiamine in the diet is loss of appetite and depression.)  Tryptophan supplements, a form of Niacin that is needed to make those feel good neurotransmitters, help heal the intestines and along with Vitamin D, improves depression as well.  

Nutritional deficiencies can occur on gluten free diet.  Check with your doctor about supplementing while you are healing.  

 

knitty kitty - Excellent! Thank you.

Yes, these are exactly the foods I've learned to avoid, with the odd exception of lower-fat dairy, which I seem to handle better than most things. I wonder if this might have to do with the fact that until very recently I was vegan (so no dairy) for many years. 

 I suspect I may have had SIBO, too, as all of the symptoms you named are greatly relieved for me as well on this new diet. 

Thank you for the supplement suggestions! I will look into those asap.

❤️  lizi

[knitty kitty]

@Lizi,

I encourage you to eliminate dairy, too.  The protein in dairy, casein, resembles the gluten molecule (molecular mimicry), so dairy can cause continuing inflammation.

Dairy is debilitating for me.  I get dizzy, depressed and demented when I consume dairy.  

Dairy and gluten are sources of exogenous opioids.  We have opioid receptors throughout our bodies including our digestive tract.  Our bodies can make its own opioids.  In Celiac, symptoms may seem worse after going gluten and dairy free because we are no longer getting those exogenous opioids from dairy and gluten.  

You may seem to tolerate that low fat dairy, but it may best in the long run to eliminate all dairy for a few weeks.   

The best sources for the B vitamins and minerals are meat, especially liver, so being vegetarian does pose problems with getting enough of the eight B vitamins, especially B12, Cobalamine, and minerals like iron.  

Talk to your doctor or a nutritionist about supplementing with vitamins and minerals while healing.  Try to eat a nutrient dense diet.  Getting checked for vitamin and mineral deficiencies is part of proper follow up care for Celiac people.

I supplement with all eight B vitamins in a B Complex, plus extra Thiamine, and magnesium glycinate, and Vitamin D and calcium.  

My favorite AIP diet book is "The Paleo Approach" by Dr. Sarah Ballantyne.  

https://www.thepaleomom.com/autoimmune-protocol-clinical-trials-and-studies/

 

Hope this helps!  Keep us posted on your progress.   Happy to answer any questions you may have.

[KennaH]

3 hours ago, knitty kitty said:

@Lizi,

I encourage you to eliminate dairy, too.  The protein in dairy, casein, resembles the gluten molecule (molecular mimicry), so dairy can cause continuing inflammation.

Dairy is debilitating for me.  I get dizzy, depressed and demented when I consume dairy.  

Dairy and gluten are sources of exogenous opioids.  We have opioid receptors throughout our bodies including our digestive tract.  Our bodies can make its own opioids.  In Celiac, symptoms may seem worse after going gluten and dairy free because we are no longer getting those exogenous opioids from dairy and gluten.  

You may seem to tolerate that low fat dairy, but it may best in the long run to eliminate all dairy for a few weeks.   

The best sources for the B vitamins and minerals are meat, especially liver, so being vegetarian does pose problems with getting enough of the eight B vitamins, especially B12, Cobalamine, and minerals like iron.  

Talk to your doctor or a nutritionist about supplementing with vitamins and minerals while healing.  Try to eat a nutrient dense diet.  Getting checked for vitamin and mineral deficiencies is part of proper follow up care for Celiac people.

I supplement with all eight B vitamins in a B Complex, plus extra Thiamine, and magnesium glycinate, and Vitamin D and calcium.  

My favorite AIP diet book is "The Paleo Approach" by Dr. Sarah Ballantyne.  

https://www.thepaleomom.com/autoimmune-protocol-clinical-trials-and-studies/

 

Hope this helps!  Keep us posted on your progress.   Happy to answer any questions you may have.

I am relatively new to the celiac diagnosis but suffered gut issues since is was a teenager-I am 64.  I find the whole idea of eliminating all the foods on the list to eliminate very depressing. I believe I am in stages of grieving food and diagnosis although it is a positive pain free path. I find I can eat no grains or dairy and introduce foods slowly. Desperation for something to eat sometimes takes over but my food selection is limited. My nutritionist has been helpful but your body is the true test. You have to trust it.  Please share your experiences as you, I feel stumble, maneuver through finding what works for you. 

[Rogol72]

On 4/27/2023 at 9:36 AM, knitty kitty said:

@Lizi,

Yes, a diet that eliminates all grains, pseudo grains, legumes, seeds and nuts is the Autoimmune Protocol Diet.  Our gastrointestinal symptoms get a chance to rest, recuperate, and repair itself if we eliminate those foods for several months.  

The AIP diet has really helped me.  A benefit has been that my SIBO is gone.  SIBO is the overgrowth of carb-loving bacteria grow into the small intestine causing bloating and gas and making us miserable.  They get starved out, and beneficial bacteria take over.  This diet helps me keep my blood glucose levels in control with Type Two Diabetes.  I also take 500 mg/day Thiamine in the form Benfotiamine (TTFD -Tetrahydrofurfuryl disulfide) which helps heal the small intestines.  (An early symptom of insufficient thiamine in the diet is loss of appetite and depression.)  Tryptophan supplements, a form of Niacin that is needed to make those feel good neurotransmitters, help heal the intestines and along with Vitamin D, improves depression as well.  

Nutritional deficiencies can occur on gluten free diet.  Check with your doctor about supplementing while you are healing.  

 

@knitty kitty,

I'm curious as to how long did it take for your SIBO to resolve on the AIP diet? Beyond addressing nutritional deficiencies, did you take any antimicrobials and/or probiotics during that time?

[knitty kitty]

@Rogol72,

Just a few weeks, if even that.  I had improvement in digestive symptoms within the first few days which kept improving.  It wasn't long before my bloated (ten months pregnant looking) abdomen began to flatten and I could find my hip bones again.  Six to eight weeks maybe.  

No, I did not take probiotics nor antimicrobials.  The microbiome shifts naturally when the diet changes.  Probiotics can be taken after the SIBO bacteria are starved out.  

I took Benfotiamine, tryptophan and L-Theanine supplements (along with a B Complex, Vitamin C, and magnesium glycinate) and  Vitamin D which helps regulate and lower inflammation.  

@KennaH

You can read of my stumbling journey through Celiac in my blog...

 

Edited April 28, 2023 by knitty kitty
Add more information

[Rogol72]

Thanks @knitty kitty, much appreciated! Here's an interesting testimonial on the efficacy of Thiamine in helping to treat SIBO for anyone who's interested  ... https://www.youtube.com/watch?v=3oyHbpsMejg .

The other aspect of SIBO which I've ignored is the role the MMC plays in clearing out the tiny leftover debris in the small intestine in between meals, and Magnesium Glycinate as a natural prokinetic.