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 Celiac.com!
    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.

Link to comment
Share on other sites

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.

Link to comment
Share on other sites
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!

Link to comment
Share on other sites
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

Link to comment
Share on other sites
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

Link to comment
Share on other sites
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.

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,046
    • Most Online (within 30 mins)
      7,748

    Averyreed8
    Newest Member
    Averyreed8
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Hi Katie I am so sorry you had two miscarriages in the past.  Try not to worry, though, because it could be that they were unrelated, perhaps? Well done for contacting your GP.  Is it possible that you can speak to your midwife in the meantime for a chat?    Cristiana  
    • Katiec123
      @cristiana hi!  the things I’ve read online about having untreated coeliac disease whilst pregnant has really scared me and made me very hesitant to continue eating it. I feel like the best option might be to eliminate gluten from my diet now and then continue with testing after I’ve given birth. I’ve got in touch with my gp and am due to get a phone call back on Monday. Really worried now as I’ve had 2 miscarriages in the past 
    • cristiana
      @Katiec123 Welcome to the forum. I started to have symptoms related to coeliac disease (mouth ulcers, aura migraines etc) but no gastric symptoms during my first pregnancy.  That went to term, in fact, I was 10 days over and had to be induced.  But my second baby, born 21 months later, arrived at 33 weeks.  He's now doing well, and taller than all of us - it was just an earlier than expected arrival! I agree, it would not be wise to eat gluten  if there is any suspicion that you have coeliac disease during a pregnancy.   It would of course be good to know for sure, one way or another, because I believe coeliacs receive extra monitoring during pregnancy in many countries.   I think it may be well worth asking your GP if you can be referred to a gastroenterologist for a formal diagnosis asap.   By the way you spell 'coeliac' I'm guessing you are posting from the UK?  If that is the case, the NHS may rush things along for you, I suspect they will.  If it appears that they cannot refer you urgently, if you have the money for a private consultation it might be well worth it, as there is a trend here in the UK (I'm British) to diagnose coeliacs without the need for an endoscopy if the blood test results are compelling. Sounds like this is the case for you.  If you can see a gastroenterologist privately s/he might be able to diagnose you there and then (make sure you take a printout of your blood tests). Generally, there is a lot of support for coeliacs through the NHS, with a nutritionist, annual reviews and blood tests to check for diet compliance and health related issues, DEXA scans to check bone density, extra vaccinations where indicated and in some areas, certain gluten free food available on prescription.  So for lots of reasons, if you can get a diagnosis it's worth it. I hope all goes well with your appointment, let us know how you get on.
    • Shireen32
      Hi , since being gluten free I am still having bad stomach problems . Such as constant gas in my stomach 24/7 ,burning, constant bubbling noises coming from my stomach and gurgling sounds that never stop .Pain under the left side of my rib cage when ever I eat and just always there’s pain there  .  My symptoms have not improved at all since being gluten free.  Could this be refractory coeliac disease ?? How is that even diagnosed or confirmed  ?  I had tests recently and this is what they say :Endomysial abs (IgA) -Positive  TTG abs (IgA)U/ml : My result is : 0.9 U/ml The Range:0 - 10 U/ml What does this mean pls ??? How can I still test positive for Endomysial abs when I am gluten free and am very careful about cross contamination? Do I even have coeliac disease I’m convinced some other digestive disorder is causing these symptoms .   I also have not had a endoscopy and now the gastroenterologist calls me after one year ( I’m from the uk and have free healthcare which has been such a nightmare with all this and never help me  )  so as I am gluten free the gastroenterologist advised me to start eating gluten again to be referred for a biopsy .. Is a biopsy even worth me doing ? The only proof I have is when I was eating gluten I could never get my ferretin , vitamin d and folate levels up . And since being gluten free these have gone up a little bit  . But that doesn’t always mean coeliac as I know gluten stops absorption in even normal people  . Pls can anyone shed some light it’s much needed ! And share some advice or answer my questions above . I have no idea with this whole coeliac stuff and am very much struggling .Much Appreciated .  
    • knitty kitty
      Vitamin D deficiency.  Not enough Omega Threes. Another autoimmune disease like arthritis, maybe.    
×
×
  • Create New...