Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

I Keep Developing Food Intolerances!?
0

6 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,096
    • Total Posts
      920,334
  • Topics

  • Posts

    • Awok, Welcome to the forum.  Have you considered trace gluten?  Here is a study on the topic: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/pdf/1471-230X-13-40.pdf It could explain why you felt good for a while.  I personally was glutened badly last summer.  I have no idea what got me.  I suspect either a prescription medication or one gluten free product (not certified).  I ended up on a whole foods diet and avoided even certified processed gluten-free foods including grains until I was healed (three to six months).  
    • I've had a range of symptoms in the last 2 months and in the past few weeks I have discovered that my TTG abs (igA) levels were 41 (my igA tests were fine). The doctor said that he is pretty much certain that it is celiac disease and I am awaiting an endoscopy to confirm it.  Before I found out that my TTG abs (igA) levels were high, I noticed that my body was reacting really badly to dairy products. I went on an elimination diet and stopped all gluten and dairy products and felt much better. I carried this on after my results and thought that I must have developed a dairy intolerance due to my celiac. 2 days ago I accidentally consumed a glass of wine which I thought was dairy free but it contained Milk. I have not had any gluten.  I am currently in the middle of a flare up. All of a sudden rashes have started to appear on my hands and my anxiety has returned (usually not a anxious person). No diarhhoea, vomiting or digestive issues. I am currently suffering from muscle twitching, rashes predominantly on hands and feet, brain fog, pins and needles/numbness on hands, feet and arms. However, I have been tested for milk allergy and this came back negative. Is it possible that it is dairy that is causing my symptoms/autoimmune reaction and could this be a reason for elevetated TTG abs (igA) levels. Or has the doctor only picked up my celiac and missing something else. If it was dairy intolerance then I would have digestive issues but I don't seem to have any. Could it be the casein protein?  Anyone been in a similar situation or can anyone provide some insight? 
    • Hello Everyone, This is my first post here and I am writing to seek help from experienced people here. I have been suffering for over 4 years now and still no where close to having a solution/ satisfactory diagnosis of my problem. My problems started in Mar 2012 with sudden diarrhea which would not go away for days. At first, I was given general antibiotics medication which would help bring down the frequency for some days and then it would come back. Since then it has been going on. I am giving a time line and the series of tests and procedures I have gone through. Would like opinion from experienced and experts here. I can send the scans and reports if required. Would really appreciate the help. Male, Indian origin Mar 2012 - onset of symptoms - multiple bouts diarrhea - spaced 3-4 weeks, bloating, weight loss (to start with I was 74 Kgs), GP managed with antibitocs and loperamide for months Dec 2012 - consulted a GI doc towards end of 2012, Colonoscopy done - conclusion was "IBS" - was advised to manage stress. use Rifaximin and immodium Jan 2013 - Aug 2013 kept moderately fine for 3-4 months ..again started getting frequent diarrhea + weight loss (was around 70 Kgs) Oct 2013 - Consulted another doc, MD - stool and blood test - Ecoli and high Eosinophil Count, medication done for 5-6 months, montinored eosinophil from nov - Mar: always kept high.. came down but then again shot up in a month Mar 2014 - Consulted another GI expert - Endoscopy and duodenal biopsy done - H Pylori and Unremarkable Villious pattern, (weight 68 Kgs) - On and Off diarrhea continued. Given: Ivermectin July 2014 - again same doc - Blood test done: High Eosinophil count,  Colonoscopy and Ileum biopsy - preserved villous architecture, features of eosinophilic enteritis; Endoscopy  + duodenal biospy again - numerous H pylori bacteria, Preserved villous crypt ratio, features of eosinophilic enteritis > conclusion: I have eosinophilic enteritis. Started on Prednisolone (steroids) Aug 2014 - 3-4 days of severe diarrhea> weight came down to 65 Kgs. Hospitalised for 3 days - continued on Prednisolonerios Sep 2014 - After 10 days only again a serious bout of diarrhea - hospitalized again - put on IV fluid for 8 days - weight 59 Kgs. Colonoscopy + biopsy done: features of superimposed c. difficile colitis, non-specific mild colitis > c. difficle test came out negative. CT Enterolysis +Scan done: mesenteric lymphadenopathy > nothing wrong acc to docs. IgA deficiency found - diagnosed Celiac - advised for Gluten free diet.   Sep 14 - May 16: continued gluten-free diet, gained weight upto 63 Kg in Jan 16, but then started losing again and came to 59 Kgs in May. No signficant diarrhea. Minor issues. June 16 onwards: Again diarrhea started, still on gluten-free diet, weight lost - 54 Kgs now. hospitalised again under same GI doc - blood test - eosinophil high, CT Enterolysis done: Showing mucosal thickening in Jejunum and Ileum; Enteroscopy (going in jejunum) + jejunal biopsy - jejunal erosions + villous blunting, marked atrophic with V:C ratio of 0.5: 1 to 0:1. HttG blood test done - Came out negative> Conclusion : No gluten exposure (how?) + Refractory Celiac disease. June - July - have been suffering from continuous diarrhea (goes off for 5-6 days and comes back, bloating, trappings in abdomen - waiting for I don't know what. On Rifaximin + Ivermectin + Codeine Sulphate (for diarrhea) I am very depressed and have no clarity on what's going on. If it is celiac, why am I not doing better on gluten-free diet. If the villous damage is still there in small intestine, then why did I kept fine for Sep - May period? HTTG - negative now but was NOT taken in Sep when I was first diagnosed with celiac. Can we trust negative HTTG now and conclude that it has come down? I am 20 kgs down from my ideal weight and still going down. Have no clue what NOT to eat to stop this. Why is eosinophil always high. Can any of you expert help me to put my case to docs in other countries? With lots of hope, Alok          
    • So, I know I'm obsessing but...... University of Chicago Celiac Disease Center website says any total IgA result over 20 won't affect the celiac test.   If this is so,  I'm still confused as to what a weak positive ttg iga means even though her result was barely in this category.  Why bother having a weak positive anyway?   I just don't get it and our doc is on vacation so I won't know what he'll recommend for another week.  I'll be finding out this week if we can see a GI without a referral. Our lyme doc (she's had lyme, may still have it, like I said it's a long story) is having her do an IgG wheat test but I don't think that has any bearing on celiac does it?    
    • Hi!  I've had good luck at the Minnesota state fair because most food booths are only doing one thing so there is no cross-contamination. For example: french fries or chocolate covered bacon or Indian kebabs.   But I live in California and I am heading to the state fair today! Does anybody have any great food suggestions that are definitely gluten-free there? Thanks, Celiac C.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,131
    • Most Online
      1,763

    Newest Member
    Feralgurl
    Joined