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.

  • 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. - Wheatwacked replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      Blood Test for Celiac wheat type matters?

    2. - trents replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

    3. - JudyLou posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

    4. - marzian commented on Scott Adams's article in Diagnosis, Testing & Treatment
      5

      A Future Beyond the Gluten-Free Diet? Scientists Test a New Cell Therapy for Celiac Disease (+Video)

    5. - Jmartes71 posted a topic in Related Issues & Disorders
      0

      Medications

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

    • Total Members
      133,145
    • Most Online (within 30 mins)
      7,748

    Marsu
    Newest Member
    Marsu
    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

    • Wheatwacked
      no argument. Never take the pills sold for Nuclear events, except in a nuclear event when instructed to by authorities.  Some of these go up to 130 milligrams per pill. 5000 times the strength of the dietary supplement.  130 times the safe upper limit.  130 mg = 130,000 mcg. Dietary supplements like Lugol's Solution and Liquid Iodine are 50 micrograms per drop.  It takes 20 drops to reach the safe upper limit. In the US the Safe upper limit is 1100 mcg.  In Europe 600 mcg and in Japan 3000 mcg ( 3 mg).
    • trents
      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
    • JudyLou
      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankles and went about to my knees. Every time I had the rash it would cover more of my body, so my arms and part of my torso were impacted as well, and it was always symmetrical. First I was told it was an allergic reaction to a bug bite. Next I was told it was eczema (after a biopsy of the lesion - not the skin near the lesion) and given a steroid injection (didn’t help). I took myself off of gluten about 3 weeks before seeing an allergist, just to see if it would help (it didn’t in that time period). He thought the rash looked like dermatitis herpetiformis and told me to eat some bread the night before my blood tests, which I did, and the tests came back negative. I’ve since learned from this forum that I needed to be eating gluten daily for at least a month in order to get an accurate test result. I’m grateful to the allergist as he found that 5 mg of doxepin daily will eliminate the rash within about 10 days (previously it lasted for months whether I was eating gluten or not). I have been gluten free for about 25 years as a precaution and recommendation from my doctor, and the pattern of breaking out every 8 years or so remains the same except once I broke out after just one year (was not glutened as far as I know), and now it’s been over 9 years. What’s confusing to me, is that there have been 3 times in the past 2 years when I’ve accidentally eaten gluten, and I haven’t had any reaction at all. Once someone made pancakes (they said they were gluten-free, they were not) and I ate several. I need to decide whether to do a gluten challenge and get another blood test. If I do, are these tests really accurate? I’m also concerned that I could damage my gut in that process if I do have celiac disease. My brother and cousin both had lymphoma so that’s a concern regarding a challenge as well, though there is a lot of cancer in various forms in my family so there may be no gluten connection there. Sorry for the ramble, I’m just doubting the need to remain gluten free if I don’t have any reaction to eating it and haven’t had a positive test (other than testing positive for one of the genes, though it sounds like that’s pretty common). I’d appreciate any thoughts or advice! 
    • Jmartes71
      Hello, just popped in my head to ask this question about medications and celiac? I have always had refurse reaction to meds since I can remember  of what little meds my body is able to tolerate. I was taking gabapentin 300mg for a week,  in past I believe 150? Any ways it amps me up not able to sleep, though very tired.However I did notice it helped with my bloating sibo belly.I hate that my body is that sensitive and medical doesn't seem to take seriously. Im STILL healing with my skin, eye, and now ms or meningioma ( will know in April  which)and dealing with this limbo nightmare. I did write my name, address ect on the reclamation but im not tech savvy and not sure if went through properly. I called my city representative in Stanislaus County and asked if theres a physical paper i can sign for proclamation for celiac and she had no clue about what I was saying, so I just said I'll go back on website. 
    • Scott Adams
      I'm not saying that some celiacs won't need it, but it should be done under a doctor's supervision because it can cause lots of problems in some people.
×
×
  • 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.