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

A Freedom Diet? Im So Lost!


Dejibo

Recommended Posts

Dejibo Newbie

I did ask my doctor who explains that my intestine is so inflamed, upset, and over worked that he has me on what is a "modified Paleo" diet. NO GRAINS. He removed tropical fruit temporarily because of the high sugar content that is in fruits grown in a high heat situation. Oranges have much more sugar content than an apple. Since my intestine has been so injured by years of allergic response, and nerve damages from MS I have been sucking up the sugar, but leaving many good nutritiousness behind. They wanted me to do a "cave man" or "paleo" diet till it healed. After my gut has calmed tropical fruits will be added back in. It was just this last week that they called to say my inflammation markers are lower and its safe to TRY tropical stuff. Why no almond grain, yet I could have almond butter, and mechanical chewing of almonds is the same as flour no? He said that anytime you mechanically process (even hand grinding) causes heat, which destroys some of the nutrition in the product. They wanted me to have as high of a level of nutrition as possible. Its been longer than a a month. I am actually bumping that magic six weeks. I was actually not supposed to be eating raw/roasted nuts yet, but was permitted almond milk as a way to transition.

Since my daughter spoke of Paleo diets and I was able to explain myself more clearly I have a better understanding.

Thank you all for the replies. Having a name or a style of diet to research and look up is immensely helpful. I have found several good cook books and even some dessert books that I can start using 4 flours in a couple of weeks. Almond, coconut, tapioca and arrowroot starch. I am looking forward to some yummies.

I guess this goes beyond a gluten free diet as its completely grain/legume/soy free. I am also dairy free, but I can still have eggs. I was told I will be able to do some nuts but not others. Peanuts are high on the mold scale and will not be allowed, but walnuts, macadamia, almonds, pecans and such will. Things that are grown UP in a tree will be allowed, but nuts grown on or in the ground will not be. My gastro is so much better! my eczema is clearing nicely, my headaches have decreased, and my tummy is behaving better.

Thanks for the support. I am off to search for recipes.


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

I did ask my doctor who explains that my intestine is so inflamed, upset, and over worked that he has me on what is a "modified Paleo" diet. NO GRAINS. He removed tropical fruit temporarily because of the high sugar content that is in fruits grown in a high heat situation. Oranges have much more sugar content than an apple. Since my intestine has been so injured by years of allergic response, and nerve damages from MS I have been sucking up the sugar, but leaving many good nutritiousness behind. They wanted me to do a "cave man" or "paleo" diet till it healed. After my gut has calmed tropical fruits will be added back in. It was just this last week that they called to say my inflammation markers are lower and its safe to TRY tropical stuff. Why no almond grain, yet I could have almond butter, and mechanical chewing of almonds is the same as flour no? He said that anytime you mechanically process (even hand grinding) causes heat, which destroys some of the nutrition in the product. They wanted me to have as high of a level of nutrition as possible. Its been longer than a a month. I am actually bumping that magic six weeks. I was actually not supposed to be eating raw/roasted nuts yet, but was permitted almond milk as a way to transition.

Since my daughter spoke of Paleo diets and I was able to explain myself more clearly I have a better understanding.

Thank you all for the replies. Having a name or a style of diet to research and look up is immensely helpful. I have found several good cook books and even some dessert books that I can start using 4 flours in a couple of weeks. Almond, coconut, tapioca and arrowroot starch. I am looking forward to some yummies.

I guess this goes beyond a gluten free diet as its completely grain/legume/soy free. I am also dairy free, but I can still have eggs. I was told I will be able to do some nuts but not others. Peanuts are high on the mold scale and will not be allowed, but walnuts, macadamia, almonds, pecans and such will. Things that are grown UP in a tree will be allowed, but nuts grown on or in the ground will not be. My gastro is so much better! my eczema is clearing nicely, my headaches have decreased, and my tummy is behaving better.

Thanks for the support. I am off to search for recipes.

As long as you are feeling better.

But you realize some of this doesn't really make sense.? You grind almonds even more to make almond butter than you do to make almond flour, as an example. Just hate to see sick people getting taken advantage of by people with little to no medical education. Glad you feel better, reading about the Paleo diet might help.

IrishHeart Veteran

You might enjoy visiting Elana's Pantry. She has MS and writes cookbooks; however, she uses almond and coconut flour. I suggest it because she has ms and celiac...and her site has other tidbits about autoimmune diets.

Www.elanaspantry.com

I second this wonderful idea! This woman has generously posted a quick start paleo menu and there are dozens of recipes and meal ideas on her site.

Also, one of your early posts says "many milk alternatives have soy in them".

Coconut milk and almond and rice milk do not have soy in them.

And you refer to your naturopath as an MD. She is not a medical doctor.

She may offer you some good advice, yes, but she is doing it based on her thoughts.

I spent 2 years listening to several MDs, an ND, and "functional med doctor" who had a ND sidekick- and honestly, too many cooks screw up the broth.

Choose one path and follow it.

You gave gluten-free a 6 month trial (which for many people is not long enough to see a lifetime of inflammation to resolve), then added gluten back in and things got worse.

To me, that speaks volumes.

FWIW, my friend with MS has followed a grain free, dairy free and sugar free diet for 25 years and has managed her symptoms well. She was gluten free and paleo long before any of us ever heard of it and I am amazed at her for sticking to it. Recently, she went vegan. To each his/her own.

I think you are doing all the right things. I know how difficult it is sometimes--as I have had to adjust my food list many times. I have other food intolerances besides gluten and I am a mess from many years of UnDXed celiac..

Stay the course. I hope you see more progress!.

Best wishes to you.

GFinDC Veteran

The main thing is you are feekig better Dejibo. Now it wil be important for you to think about the changes in your diet and figure out what made the improvement happen. That way you can aviod eating the foods that make you sick. If you search the forum for threads on elimination diets you will find lots of ideas for doing them. They can be a big help is determining food intolerances. An elimination diet can help with your diet choices.

GottaSki Mentor

Just to clarify for you - peanuts are legumes, not nuts. I actually stored this information in some tiny corner of my brain from nutrition class as a youngster - but brain fog didn't let me access it until I was educating myself about food chemistry after Celiac diagnosis.

Eliminating many food groups is tough and may not be necessary - but it can't hurt and very well may help. Not sure what your medical team will suggest, but I would not go longer than six months without trialing the removed foods individually with at least three days to a week between trials while keeping a detailed food symptom log. There are many healthy foods you may be able to reincorporate into your diet.

Good Luck :)

pricklypear1971 Community Regular

Just to clarify for you - peanuts are legumes, not nuts. I actually stored this information in some tiny corner of my brain from nutrition class as a youngster - but brain fog didn't let me access it until I was educating myself about food chemistry after Celiac diagnosis.

Eliminating many food groups is tough and may not be necessary - but it can't hurt and very well may help. Not sure what your medical team will suggest, but I would not go longer than six months without trialing the removed foods individually with at least three days to a week between trials while keeping a detailed food symptom log. There are many healthy foods you may be able to reincorporate into your diet.

Good Luck :)

Exactly (peanuts are legumes, as are probably other "nuts" from the ground).

And eggs are NOT dairy (milk). They are eggs, technically a protein.

You need to educate yourself about food. You need to be able to discern if what you are reading, hearing, and doing are correct.

If someone tells you something, look it up. Does it sound reasonable? Because doctors (all types) and nutritionists toss random crap out there. Some of it is good advice, and some of it is opinion, outdated, nebulous, or just flat-out WRONG.

There are excellent resources out there for people dealing with AI issues. People who have DONE IT. Not just professionals who give advice, talk the talk, but don't walk the walk. And while professionals (MD's, MD's, nutritionists,RD's) can give excellent advice and on some days save your life, it is rare to find one who has "walked the walk".

And if more followed the advice they dished out, AI management would be light years ahead, IMO.

RuskitD Rookie

I wish I could offer you help with the cookbooks or links, but I do not. I just wanted to stop in and offer a HUGE GENTLE HUG. I know it is frustrating to deal with all of this and with a foggy mind on top of it.

I hope your answers come soon!


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



Celiac.com Sponsor (A8-M):



  • 1 month later...
Aly1 Contributor

I've got to say that I think Dejibo is right - she came here for support and was feeling overwhelmed, and the response she got was to have her current diet picked apart and having to defend it. She didn't ask anyone what they thought of her diet. It would be one thing to have a single person gently warn about being lead astray by people with the best intentions who might or might not have the right background to help her, but to be questioned several times on its validity isn't cool. Someone asked, she answered. If this is the path she wants to take with her health, that is totally her right. If she'd asked for opinions on it it would be another thing entirely. How about some white kid gloves for someone who's been through it and is already overwhelmed. :/

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,397
    • Most Online (within 30 mins)
      7,748

    Megannnnn
    Newest Member
    Megannnnn
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Scott Adams
    • Scott Adams
      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
    • Clear2me
      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • 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.