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

Need Advice


NewToGlutenFreeLife

Recommended Posts

NewToGlutenFreeLife Newbie

Hello,

After hearing about many improved lifes of celiac-positive friends, and many symptoms I learned may be related to allergies, I decided to do an elimination diet this month. I am already a lifelong vegan, so, in addition, I cut out soy, peanuts, corn, gluten, sulfur-rich food (onion & garlic), chilies, citrus (except lemon) and nightshades (potatoes, tomatoes, peppers, cherries and eggplant). I also gave up coffee, processed food, sugar etc.

After 10 days of this diet I spoke with a doctor that reported a high rate of clinical success with a food allergy panel (blood test). I had heard otherwise previously & still read that poitive results by blood are 55% accurate. Nonetheless, I was convinced by this doctor that a blood test may be a more accurate route to take because I could be allergic to something I was still eating. The Dr. also told me to add back all the food I had elliminated for at least 2 weeks in order to get an accurate test. So that night I had stir-fry with wheat noodles. I was very sick within minutes. My symptoms came back dramatically, along with new symptoms: Diarrhea, Vomiting, loud tinnitus (it had gotten fainter on the elimination diet), all-over body malaise, extreme fatigue, mental "fog," instant stomach bloating, epigastric bloating...in short, I feel aweful. NOW, 4 DAYS LATER, and 100% gluten-free I still feel aweful. I feel worse that when I began the elimination diet. I'm eating very little but my digestive system is in uproar. So now I'm commited to remaining on this strict diet instead of getting testing because I cannot bare to feel this way.

Sidenote: before trying the elimination diet I felt healthy but had fatigue, mental fog, achy (like a flu-but I felt this way over a year), and bloated. I felt hungry but wonderful when I began the diet. My stomach wasn't distended & I felt hollow and clean (like I feel when fasting) even though I was eating enough calories.

Any thoughts? Similar experiences? Suggestions?


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



Celiac.com Sponsor (A8-M):



pricklypear1971 Community Regular

Was the stir fry homemade and msg-preservative free? I ask because most premade ones have nasty nasty stuff in them and you may have a problem with that, too.

MissKris2 Newbie

My symptoms got worse (and I developed some new ones) after I eliminated gluten and then added back in. I think that's pretty common. If the gluten free diet makes you feel better, stick with it!

domesticactivist Collaborator

I'm so sorry! It can be really hard to tell what the problem is when you add everything back at once. I'd go back on the diet that was helping you and then slowly add one thing back in (waiting a few days each time).

Our family has been doing the GAPS diet. It starts off very basic and then adds foods in slowly. We thought more things were a problem than actually are. For instance, we thought nightshades were an issue for our son but he's actually fine with them now that grains are out. Also, foods I thought were NOT a problem for me have shown themselves to be the causes of some of my symptoms. For example, cheese was my bad breath and mental instability, and my parasthesia is hypoglycemia due to spiking my blood sugar and then it dropping in the night.

We're all so individual... it takes experimenting to figure out what works and what doesn't. Our experience with allergy testing was that the IgE tests were useful, but IgG isn't a reliable indicator of an underlying problem.

NewToGlutenFreeLife Newbie

Was the stir fry homemade and msg-preservative free? I ask because most premade ones have nasty nasty stuff in them and you may have a problem with that, too.

Yes, the dish was homemade & organic. I stir-fried with a little organic sesame oil, ginger & added ground sesame seeds to the dish. The veggies were organic too & nothing new (organic zuccinni, carrot, red cabbage)

NewToGlutenFreeLife Newbie

I'm so sorry! It can be really hard to tell what the problem is when you add everything back at once. I'd go back on the diet that was helping you and then slowly add one thing back in (waiting a few days each time).

Our family has been doing the GAPS diet. It starts off very basic and then adds foods in slowly. We thought more things were a problem than actually are. For instance, we thought nightshades were an issue for our son but he's actually fine with them now that grains are out. Also, foods I thought were NOT a problem for me have shown themselves to be the causes of some of my symptoms. For example, cheese was my bad breath and mental instability, and my parasthesia is hypoglycemia due to spiking my blood sugar and then it dropping in the night.

We're all so individual... it takes experimenting to figure out what works and what doesn't. Our experience with allergy testing was that the IgE tests were useful, but IgG isn't a reliable indicator of an underlying problem.

Thanks for sharing, My daughters are on the diet with me but they were fine with the wheat pasta. I removed gluten foods from the house for now. I'm still feeling ill from the pasta.

NewToGlutenFreeLife Newbie

My symptoms got worse (and I developed some new ones) after I eliminated gluten and then added back in. I think that's pretty common. If the gluten free diet makes you feel better, stick with it!

Thanks. I didn't realize this was common. I'm at a loss for what I can eat now...


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,202
    • Most Online (within 30 mins)
      7,748

    PatBurnham
    Newest Member
    PatBurnham
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.