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.

  • 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. - Scatterbrain replied to Scatterbrain's topic in Sports and Fitness
      3

      Feel like I’m starting over

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

      Recovery from gluten challenge

    3. - Scott Adams replied to Kirita's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Recovery from gluten challenge

    4. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Brain fog

    5. - trents replied to Scatterbrain's topic in Sports and Fitness
      3

      Feel like I’m starting over


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,287
    • Most Online (within 30 mins)
      7,748

    Desert Ratt
    Newest Member
    Desert Ratt
    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

    • Scatterbrain
      Thanks to those who have replied.  To Cristina, my symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell. To Trents, We didn’t do any of the construction but did visit the job site quite often.  While getting the old house ready we stirred up a lot of dust and I’m sure mold but haven’t been back there for over a month.
    • Kirita
      Thank you so much for your response! I have a follow-up appointment with her pediatrician next week, and also an appointment with her pediatric GI Dr. Your message gives me some ideas for questions to ask the doctors. My daughter went strictly gluten-free in January following her first endoscopy so I’m guessing her diet is pretty solid. She is compliant but also reliant on others to make her food (at school and home) but she didn’t have this problem prior to the gluten challenge when she went strictly gluten-free. It really makes sense to me that the gluten challenge inflammation hasn’t healed and I will be asking her doctors about nutritional issues. I ask for anecdotal stories because the research surrounding the gluten challenge seems to be inconsistent and inconclusive (at least what I’ve been able to find!). Thank you so much for your response!
    • Scott Adams
      While the positive endoscopy confirms the diagnosis, it's important to be skeptical of the idea that your daughter will simply "bounce back" to a pre-challenge state. The gluten challenge was essentially a controlled, prolonged exposure that likely caused significant inflammation and damage to her system; it's not surprising that recovery is slow and that a subsequent exposure hit her so hard. The persistent fatigue is a major red flag that her body is still struggling, potentially indicating that the initial damage hasn't fully healed or that her system is now in a heightened state of reactivity. Rather than seeking anecdotal timelines from others, her experience underscores the critical need for close follow-up with her gastroenterologist to rule out other nutrient deficiencies commonly caused by celiac flare-ups, like iron or B12, and to consult with a dietitian to scrutinize her diet for any hidden sources of cross-contamination that could be perpetuating her symptoms. The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.      
    • Scott Adams
      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Brain fog, like other celiac disease symptoms, does improve after you to 100% gluten-free, and supplementation will also help.      
    • trents
      Were you doing any of the new home construction yourself? Drywall compounds and adhesives used in construction have been known to cause problems for some celiacs.
×
×
  • 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.