Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

I Keep Developing Food Intolerances!?


Maryw88

Recommended Posts

Maryw88 Apprentice

Hi all,

I could really use some advice here. I am very frustrated and to the point of not wanting to eat ANYTHING.

I figured out I am at the very least highly gluten intolerant, I believe I have celiac disease. Since I found this out I have also discovered a severe soy and caeisin intolerance. If this wasn't frustrating enough, since I've cut these three culprits out of my diet I keep developing other sensitivities. I have been gluten low for about 1 1/2 years, but I only recently decided I could have celiac and went strictly GFCFSF.

Intolerances include: caeisin, soy, peanuts, coffee, citrus fruit, tomatoes, potatoes, broccoli, and cauliflower, most beans. I am beginning to suspect corn, quinoa, and eggs.

My primary care physician doesn't believe I have celiac disease, she tells me I have a "sensitive system." She helped me get my severe Vitamin D and B12 deficency under control, but told me I was fine after that. I tried to reintroduce gluten to get tested by another doctor but was violently ill. I also have acid reflux and burning or discomfort after every meal even on a gluten-free diet.

Basically, how do I stop this!? Will this get better on a gluten-free,CF,SF diet? I have been looking into the Specific Carbohydrate Diet as well as a rotational diet but I don't know if I am just not being patient enough with my gut? Will this get better without more drastic dietary change?

Sorry for the long post, I am just very frustrated and honestly, lonely. No help from anyone in the medical field is SO FRUSTRATING.


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



Celiac.com Sponsor (A8-M):



Newbee Contributor

I feel for you. I am diagnosed with celiac disease and have a lot of damage in my system. I've found that I also have a lot of food intolerances and have not healed by just being gluten free (I've been gluten free over 13 months now). Based on advice from this forum I did try specific carbohydrate diet and have been doing that for several months now. It does seem to be helping although I do get tired of the limitations of the diet and am afraid I may be on the diet forever. Or maybe I'm just not very patient. Having food issues is very frustrating and I haven't got much help from the medical community.

ciamarie Rookie

I hear ya! I certainly have felt like that some days myself. The day that nearly takes the cake was the day after I had just baked some beautiful and delicious gluten-free sugar cookies, I realize that one of my sensitivities is sulfites, of which corn starch is sulfited, which was in the baking powder I used to make the cookies. I think I still have a few of them in the freezer, just in case I can eat them some day.

In some cases, it may not be ALL tomatoes, for instance, but you need to try vine-ripened tomatoes (since the others are likely gassed), or that organic will work. I did have to give up coffee for the most part, as a daily beverage. It will get better, as you heal. And keeping a food diary, noting brands of things you try should help. It does take some detective work, but it's do-able. Hang in there!

1desperateladysaved Proficient

I am thinking that your body is developing new intolerances perhaps, but now it can tell you what is bothering it. There are many foods to try. I think I get a more varied diet with each thing I rule out. Your body may still be in transition. I know I can't tell withdrawl symptoms, from reactions, from ?

I am thinking with time you will be able to sort these things on. Hang on for the ride.

Diana

cahill Collaborator

Hi all,

I could really use some advice here. I am very frustrated and to the point of not wanting to eat ANYTHING.

I figured out I am at the very least highly gluten intolerant, I believe I have celiac disease. Since I found this out I have also discovered a severe soy and caeisin intolerance. If this wasn't frustrating enough, since I've cut these three culprits out of my diet I keep developing other sensitivities. I have been gluten low for about 1 1/2 years, but I only recently decided I could have celiac and went strictly GFCFSF.

Intolerances include: caeisin, soy, peanuts, coffee, citrus fruit, tomatoes, potatoes, broccoli, and cauliflower, most beans. I am beginning to suspect corn, quinoa, and eggs.

My primary care physician doesn't believe I have celiac disease, she tells me I have a "sensitive system." She helped me get my severe Vitamin D and B12 deficency under control, but told me I was fine after that. I tried to reintroduce gluten to get tested by another doctor but was violently ill. I also have acid reflux and burning or discomfort after every meal even on a gluten-free diet.

Basically, how do I stop this!? Will this get better on a gluten-free,CF,SF diet? I have been looking into the Specific Carbohydrate Diet as well as a rotational diet but I don't know if I am just not being patient enough with my gut? Will this get better without more drastic dietary change?

Sorry for the long post, I am just very frustrated and honestly, lonely. No help from anyone in the medical field is SO FRUSTRATING.

I am not sure you want to hear this but,

I took me going gluten,soy,egg,legume,nut,corn, nightshade, grain (except rice) and dairy free for six months to get my gut to heal enough to even start adding foods back. I also had to eliminate and/or limit certain fruits and veggies. I could not ( and still can not ) tolerate most meats. The foods I could eat I had to rotate .

I had leaky gut and at one point I would have swore ( and did , alot, along with a lot of crying and screaming :ph34r: ) that there was not a single food my body could tolerate.

Most , not all but most , of these food I have now been able to add back in to my diet.

Some ( gluten and soy ) will NEVER be part of my diet .

Some ,like nightshades, I still have to rotate.

But over all much better now :D

eatmeat4good Enthusiast

I'm sorry you are feeling so bad. My first year was much the same. I just want to say that if you really are Celiac and you have not been strictly gluten free and watching cross contamination then your system has not had much chance to heal at all. Give gluten free a good strict try including cross contamination.

Secondary intolerances are very common. My first year I went through eliminating gluten, then dairy, then soy, salicylates, nightshades, citrus, you name it, I tried eliminating it. What really helped was paying strict attention to gluten CC and eventually I got everything back but Soy (still strictly free of soy)and Salicylates (which are cumulative). I have to watch them, but I can eat some. It is very frustrating I know. I didn't want to eat at all for a while too. But the gut cannot begin to properly heal until you have really and truly eliminated gluten. You may be surprised at the foods you will be able to tolerate later. You know your body better than your Dr. does. If you believe you are Celiac/Gluten Intolerant then be very serious about it so your body can heal itself. Welcome to the forum!

I almost forgot, I cannot eat legumes at all. Very like gluten in my system. But that elimination has not bothered me in the least. You may have to do the elimination thing for a while to get some healing.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,100
    • Most Online (within 30 mins)
      7,748

    Jules13
    Newest Member
    Jules13
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @BlakeAlex! Is this the GI Reset product you are using?: https://inwellbio.com/wp-content/uploads/2023/08/GI-Reset_Info-Sheet.pdf There is a lot of weird stuff in that you could be reacting to. Personally, I would discontinue it as I doubt it's really doing you any good anyway. Getting to the point where you are truly eating gluten free consistently usually involves a significant learning curve as gluten is hidden in the food supply in many ways by manufacturers. For instance, would you ever expect to find it in soy sauce or Campbell's tomato soup? But it's there and a main ingredient. Getting rid of macro sources of gluten is relatively easy. Just cut out bread, cake and pasta. But avoiding the hidden sources and the cross contamination sources is much harder. I am including this article that might be of help to you as a new celiac in getting off to a good start:    Long-term undiagnosed celiac disease inevitable leads to nutritional deficiencies because of the damage done to the lining of the small bowel where almost all of the nutrition in our food normally is absorbed. We routinely recommend that newly diagnosed celiacs invest in some quality gluten-free vitamin and mineral supplements. And I'm talking about more than a multivitamin. We recommend a high potency B-complex, 5-10,000 IU of D3 daily, Magnesium glycinate, and zinc. I suspect your mouth and throat ulcers are nutritional deficiency related. Costco is a good place to get good quality gluten-free vitamin and mineral supplement products at a reasonable price. Are you on medications? May we ask your relative age?  
    • BlakeAlex
      Hello, I was recently diagnose with Celiac Disease and without realizing, I had every symptom on the list. Now I am moving as fast as I can to a total recovery. I thought I was doing well but I notice my ulcers on my tongue and throat and cough are starting to come back again.  Has anyone experience these symptoms? Also, I am incorporating GI Reset powder for a jump start to recovery.  Thanks in advance, Blake     
    • trents
      No. There is no damage done to the gut lining with NCGS.
    • MagsM
      Hi Trents, Thanks for the feedback. Yes, I do have concerns about NCGS. Would this show up if I did the endoscopy testing?
    • trents
      @MagsM, It concerns me that your physicians seem to be preoccupied with the concept of "classic celiac disease".  That suggests to me their knowledge of celiac disease may be dated and they don't have a concept yet for the "silent celiac" who doesn't manifest with classic GI symptoms.
×
×
  • Create New...