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

Frustrated /possible Other Sensitivities


veryami1

Recommended Posts

veryami1 Apprentice

So I've been gluten free for over three months now.You would think it would be getting easier, with fewer glutening incidences, but not the case for me. Short of locking myself in the house and never eating out, is there any option? I'm thinking I haven't been as strict as I need to be, because I am getting sick once a week, if not more. When I do eat out, I tend to stick to places where I've eaten and not gotten sick before.  but maybe that's too much of a risk for a newly diagnosed Celiac? 

 

But now I seem to be getting sick from something else. I can tell because I haven't eaten out all week, and tonight, for example, I had cramps and D.  I've heard some things about corn sensitivity, and I had popcorn, so I'm thinking maybe that's it. However, I've had corn and popcorn previously with no reaction. So what's the deal there?  

 

I think I need to eat entirely clean for awhile and do the whole elimination diet. Any recommendations of what to eat thats entirely safe, no possible sensitivity? Rice, bananas, chicken? If I do this, I must need a multi-vitamin, no?

 

I'm just sooo frustrated and while I would never hurt myself, I seriously cannot imagine living like this for the rest of my life. I sometimes just want to lock myself in my bedroom and never leave.  


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



Celiac.com Sponsor (A8-M):



StephanieL Enthusiast

Many here will suggest you not eat out at all for the first 6 months or so to give you body a real chance at healing before trying to rock the boat.  If you have been dx with Celiac then there should be a need beyond that than eating gluten-free. Some do find more relief from also removing dairy but I would give a truly gluten-free (i.e. not eating out) a real chance before pulling other foods.

dilettantesteph Collaborator

It won't be like this for the rest of your life.  You are healing still.  You are learning about what you can and can't eat still.  It will get better as you figure things out.  It is really hard at the beginning to tell what is making you sick.  It might be better to eat pretty simply and not eat out for awhile to simply matters.  It has only been a little over three months.  I know that seems like a long time to you, but it isn't to me.  I have heard the estimate of one month healing for each month sick.  I don't know the source of that, but it doesn't seem unreasonable to me.  In my opinion, it is too soon to look for other causes. 

 

For entirely safe, have a look at the trace gluten contamination elimination diet in his study: Open Original Shared Link

click on the Table 1 link to get a list of allowed and not allowed foods.

You may decide on a less strict version.

 

I hope you feel better soon.

icelandgirl Proficient

Hi Ami,

I've had this issue too and it is really frustrating. Someone on here suggested a food diary. By doing that and writing down everything I ate plus whenever I had D...gross I know...I was able to figure out some stuff that bothers me whenever I eat it. I was desperate when I started it because it felt like I was always getting D. So I started off with only chicken, rice, potatoes, sweet potatoes, bananas, strawberries and blueberries. Did just that for a week...really boring...but no D. Then I added one thing at a time...steamed carrots, steamed asparagus...etc. For me I found that high fat or high sugar sets my system off. Not sure if it's because of celiac or lack of a gallbladder. I had the gallbladder out 2 weeks after celiac diagnosis and will probably never know.

I hope this helps you and that you feel better!

dilettantesteph Collaborator

I had problems with high fat too.  Then I learned about exocrine pancreatic insufficiency. 

https://www.celiac.com/forums/topic/105648-exocrine-pancreatic-insufficiency/?hl=%2Bexocrine+%2Bpancreatic+%2Binsufficiency

Pancreatic digestive enzymes fixed that.  I seem to only need them for a few weeks when I have been glutened.

cristiana Veteran

Hi dillentantesteph, that's helpful. I too seem to be encountering new gastro problems too, not D neither C but since having been glutened (wheat in chocolate, why do they do that?) my problems with dairy has come back, I feel like I have trapped wind (left side pain, by groin). My nutritionalist thinks I need to take some probiotics as I have had to take three rounds of antibiotics in the last 18 months.  So I am wondering if these enzymes might help, too.  I didn't realise you could take them as and when you need them.  Can you just get them over the counter or is it something the doctor has to prescribe?

NatureChick Rookie

Congratulations on hitting the three month mark.

But that is still pretty early in the process so don't beat yourself up too badly. You're still in the phase where you are learning lessons from mistakes. And though it may seem as if you're never going to make it a full month without getting glutened, you will get better at it. 

Eating out is always going to be a high-risk prospect, so you may want to skip it, at least temporarily.

But once your body starts to function properly again, it is really common for people to notice other food intolerances they didn't notice before. Some might just be temporary, others just a matter of eating more balanced meals, so don't panic that there won't be anything left for you to eat.

A food/symptom diary is the easiest way to figure out additional intolerances or potential sources of hidden gluten. And don't forget to include spices and seasonings in what you log because not all of them are gluten free.

Becoming familiar with some of the common food intolerances helps identify patterns too. In addition to lactose, fructose, allium, nightshades, fat, etc., don't forget about artificial colors that are known for causing reactions and intestinal damage. 

Speaking of chemicals, you may also want to become familiar with the foods that are most important to buy organic because residues of toxic pesticides, herbicides, fungicides, and insecticides can also cause stomach upset. If you don't have a corn intolerance, make sure that you're making your popcorn from scratch and not microwavable where chemicals from the bag or the flavoring can be a problem.

I have a real life friend who is also gluten free and we both agree that we didn't get good at it until about the nine-month mark. Nowadays, I barely even think about it, even when grocery shopping. I simply have new favorite foods and a much higher percentage of my shopping is done in the produce section so that I can cook from scratch.


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



Celiac.com Sponsor (A8-M):



dilettantesteph Collaborator

Hi dillentantesteph, that's helpful. I too seem to be encountering new gastro problems too, not D neither C but since having been glutened (wheat in chocolate, why do they do that?) my problems with dairy has come back, I feel like I have trapped wind (left side pain, by groin). My nutritionalist thinks I need to take some probiotics as I have had to take three rounds of antibiotics in the last 18 months.  So I am wondering if these enzymes might help, too.  I didn't realise you could take them as and when you need them.  Can you just get them over the counter or is it something the doctor has to prescribe?

 

Enzymes for EPI digest fat, protein and carbohydrates.  There are over the counter digestive enzymes too, but they aren't regulated as well as prescription enzymes.  Problems with dairy are more likely due to lactose intolerance.  Lactase is produced in the tips of the villi.  There are lactase supplements available too, or you can find lactase in enzymes formulations.  I haven't tried any.  I just decrease my dairy consumption until I recover.

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. - asaT replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      nothing has changed

    2. - nanny marley replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

    3. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      Supplements for those Diagnosed with Celiac Disease

    4. - par18 replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is it gluten?

    5. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

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

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • asaT
      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
    • asaT
      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel.  they offered me an endoscopic biopsy 3 months later, but that i would need to continue eating gluten for it to be accurate. so i quit eating gluten and my intestine had healed by the time i had the biopsy (i'm guessing??). Why else would my TTgIgA be so high if not celiacs? Anyway, your ferritin will rise as your intestine heals and take HEME iron (brand 4 arrows). I took 20mg of this with vitamin c and lactoferrin and my ferritin went up, now sits around 35.  you will feel dramatically better getting your ferritin up, and you can do it orally with the right supplements. I wouldn't get an infusion, you will get as good or better results taking heme iron/vc/lf.  
    • par18
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
×
×
  • 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.