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
      131,913
    • Most Online (within 30 mins)
      7,748

    patanddiane
    Newest Member
    patanddiane
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rogol72
      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • 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.