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

Are You Beyond Your Past Intolerances? Needed Answers For How To.


1desperateladysaved

Recommended Posts

1desperateladysaved Proficient

I am hearing so many that are struggling with intolerances and having extreme difficulty. They seem to need to avoid everything in their diet.

I am here to ask to hear from someone who has been there done that. We need to know how you did it.

Sometimes I am feeling so well lately, I am wondering if I have done it, but I want someone gluten free longer than 7 months.

I hope all will get there one day: Beyond intolerances.

If you are still in the process, you might describle how you are trying to overcome it.

Diana


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



Celiac.com Sponsor (A8-M):



Chaff Explorer

Diana, once again, we are totally on the same wavelength. Just sayin'. :rolleyes:

mushroom Proficient

Four that I am beyond: can eat all dairy now; can eat things with corn starch in them now; can eat things with potato starch now; can eat things with soy lecithin now. Small but significant steps in what can be added back into the diet. Pamela's baking mix, anyone? Udi's bread? Chocolate?

GottaSki Mentor

Took me a very long time to find all mine, but I can do small amounts of cocoa and I had a slip up a week ago and ate dairy - no reaction! I'm staying the course on my current list of foods since I've only been vertical again for a little over a month.

Mid-May I plan to trial many of my problem foods with the exceptions being gluten and histamine containing and histamine inducing foods.

Hang in there Diana - it really does get better and going without many foods doesn't bother me now that I'm feeling better - you will get here too :)

Edited to add...just read your tag -- sorry guess I should not have responded as I have not overcome many intolerances -- I just have every reason to believe I will.

bartfull Rising Star

Got corn starch back. Seem to have gotten nightshades back. Although I haven't tested ASPERIN yet, I seem to do OK with the salicylates in most fruits and veggies now. I can eat chocolate again too. :wub: There are a bunch of things I haven't tested yet.

How did I do it? By sticking to nothing but whole foods for a year. Then I added back one thing at a time, and only trying a new food once a month. And I really think that the fact that I went totally organic for the first six or eight months really helped.

JNBunnie1 Community Regular

I have been gluten free for 8 years, I developed a (likely stress-related) intolerance

of all things tomato a couple years ago. Gave myself a year off, tried it again, was good.

Sometimes, you just have no idea.....

Gemini Experienced

I have been gluten-free almost 8 years and the only other intolerance I have is to dairy. I haven't gotten that back so it's doubtful I will at this point.

I can eat small amounts like milk in my tea but can't eat ice cream, drink a glass of milk or eat anything with a big dairy hit. However, I am not too bothered by this because dairy isn't always the best thing to go heavy on. If you have asthma, which I don't, or have allergies where you can develop congestion from time to time, dairy is something to be avoided as it's very mucous producing. I feel clearer in my lungs and head when I don't eat dairy. Besides, there are alternatives like soy milk and almond milk, which I like so it's not a problem for me.

Other than that, I have healed to the point where I am doing well and rarely get sick from GI issues anymore.


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



Celiac.com Sponsor (A8-M):



Takala Enthusiast

Had to go grain- free in the beginning, did everything with nuts I ground myself, and at first dairy free, then a tiny bit of hard cheese, but after a nearly week - long storm damage power outage around 2008(?), realized that it would be easier in an emergency if I could tolerate some sort of packaged foods, so I gradually added in things like rice cakes and peanut butter. Finding an agreeable p-b was entertaining ("here, honey, could you finish this jar while I open a new one :rolleyes: ") but I got there. Was really amazing the first time I ate gluten-free pizza out and didn't suffer, took a while. Had to go back to avoiding cc in many gluten free grains with commercially prepared products because I can't do soy flour, flax or oats, but, fortunately I have the "baking gene" :D , got to taste what is possible, and I just make my own stuff, using the gluten-free Chebe tapioca as a base product, because at least that's in the hf stores around here.

I don't think of this as being "restrictive," because it certainly beats being crippled by neurological problems, so much as it is just being time consuming. I have family members who have actual food allergies and who must avoid other categories, which I can eat, so I think I'm fortunate, and I think that is actually a bigger problem, a sort of mental trick. They probably think the same thing. To each their own... B)

GottaSki Mentor

How could I forget.....I got almonds back - was nut free for over a year - still can't do cashews - haven't tried others yet. Almonds were a fantastic addition - I use whole raw almonds to make milk, flour, butters and the best thing is my cocoa "mousse" - yum!

cahill Collaborator

I have been gluten free for over 3 years , soy free over 2 years. I has taken me a very long time to identify all my intolerances.

I fought very very hard to keep corn ( that did not work out so well :blink: I am grain free ( with the exception of rice , which I limit ) Xanthum gum is totally of limits :ph34r: . Legumes and nuts I rotate in/out of my diet .Potatoes are not happening for me but now I can rotate tomatoes and peppers in /out of my diet.I have a lot of foods that I still rotate in/out of my diet .

The key to getting "past" your intolerances? I would think it would be identifying them. Then eliminating them to allow your body to heal, then reintroducing them ( one at a time) to judge your reaction to see if it is now something your body can tolerate.

Not to be a downer but, I do not expect to " get beyond" most of my intolerances. I was undiagnosed for an extremely long time. There was a lot of damage . I have A LOT of intolerances. Most of them are here to stay.I live with that every day and I am OK with that because for the first time ( probably ever in my life ) I am healthy :D And I am good with that :D

I did get dairy and eggs back :D ( two biggies to me :D )

  • 5 weeks later...
designerstubble Enthusiast

Just found this thread, been looking for some inspiration! It's a great topic (for me!), as I am SO struggling with just eating fruit & veg. It's so good to hear that some of you are actually getting a few foods back. I'd be happy with dairy, eggs, and corn. Life would be soooo much simpler. And happier.

pricklypear1971 Community Regular

I got back high iodine foods (egg yolks, potato, asparagus, dairy, sea fish, etc) after my DH cleared. Weaned back on them slowly. Took about 4-5 months total.

Can have more sugar now that adrenals have improved: that includes fruit and processed sugar. Drastically reduced it for months.

Have discovered sugar delivered with starch/grain is not good. I have no "stop" button. Sugar with coconut/nut flour hits the stop button. Problem solved.

My gut is much better, energy better, no rash (unless I get a virus then it seems to flare just a tad, but nothing that stops me). I attribute the bulk of "feeling better/energy" to time, healing, and finally being able to work out. That said, working out has been an adventure with a few setbacks. But overall, I move forward.

I've been gluten-free almost2 years.

  • 2 weeks later...
1desperateladysaved Proficient

I have a concern that  eliminating food could be conterproductive..  Someone might get malnourished as a result.  That is why I was wondering if anyone recovered when they had very few things left in their diet.  The whole thread has been interesting for me, though.  I was intolerant to some degree to most things I was eating.  Rather then just eat the ones Ihat I had left, I began a rotational diet.  I was puzzling which way to go, to take out every food that I had antibodies for, or the rotational diet.  The rotational diet has done well.  I didn't have  an IgE reaction to anything, so that is why I was allowed to eat all of the foods.  If a person has an allergic reaction, they would not have it in their rotation.

 

Any thoughts in these directions I would appreciate.

dilettantesteph Collaborator

My experience seems different from others here.  It has been close to 6 years now.

 

I hadn't been eating dairy for years when I was diagnosed, but I was able to add it back after about a year.  Then I started reacting to it again.  I found some grass fed milk locally and I can drink that, but when winter comes, the cows get wheat and I can't drink it anymore.  The same thing happened with eggs.  I was told that I must be intolerant of nightshades because I reacted to tomatoes.  Then I found someone at the market whose tomatoes I could eat.  Unfortunately she wasn't there the next year, but I had planted some of my own by then.  Same thing happened with rutabega, squash, potato, etc.  I would get quite sick sometimes from other sources, but when I grew my own I was good. 

 

As far a your questsion goes, I did seem to be able to heal with a limited diet.  I paid careful attention to getting all necessary nutrients and that can be difficult with a limited diet.  My diet is still pretty limited in the winter.  It would sure be a lot easier if I could find more sources of food that I could trust. 

 

It is really nice feeling this healthy.

cahill Collaborator

I found going organic resolved a lot of my issues . Meaning that it was the pesticides  ,waxes  ,additives and fertilizers  I was reacting to rater then the food its self .

Buying local organic fresh foods has made alot of foods tolerable.  Winter is tough but we deal :)

 

** just to add ** certain foods are off my consumable list permanently,,, meaning even if  organic  they are  NOT something my body tolerates .   Soy,Gluten,Sugar/Artificial sweeteners  and grains are OUT of my diet .

cahill Collaborator

I have a concern that  eliminating food could be conterproductive..  Someone might get malnourished as a result.  That is why I was wondering if anyone recovered when they had very few things left in their diet.  The whole thread has been interesting for me, though.  I was intolerant to some degree to most things I was eating.  Rather then just eat the ones Ihat I had left, I began a rotational diet.  I was puzzling which way to go, to take out every food that I had antibodies for, or the rotational diet.  The rotational diet has done well.  I didn't have  an IgE reaction to anything, so that is why I was allowed to eat all of the foods.  If a person has an allergic reaction, they would not have it in their rotation.

 

Any thoughts in these directions I would appreciate.

 

 

The malnourishment I suffer before my elimination diet was killing me. So eating foods that my body could  actually absorb ,, even though very limited in my selection ,, saved my life .

Removing those foods I was intolerant  of allowed my body to utilizes the foods it could actually absorb and allowed my body   to heal so that I could eventually add some foods back into my diet

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

      Seeking advice on potential gluten challenge

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

      Seeking advice on potential gluten challenge

    3. - 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)

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

      Medications

    5. - Scott Adams replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Blood Test for Celiac wheat type matters?

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

    • Total Members
      133,136
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • 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.
    • Jmartes71
      I also noticed I get debilitating migraines when I smell gluten, wheat and its not taken seriously when it affects one in every way.Im still begging to properly be heard.I also noticed tolerance level is down the drain with age and life changes. I have been told by incompetent medical that im not celiac or that sensitive. Diagnosed in 1994 by gi biopsy gluten-free ever since along with other lovely food allergies. Prayers
×
×
  • 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.