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

To Rachel-24


elisabet

Recommended Posts

elisabet Contributor

Dear Rachel,I sent you som pm,did not get any answer,maybe there is something wrong with my account.

Can you please tell me how is your diet now? what you eat ?

thanks a lot: Elisabet


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



Celiac.com Sponsor (A8-M):



Rachel--24 Collaborator
Dear Rachel,I sent you som pm,did not get any answer,maybe there is something wrong with my account.

Can you please tell me how is your diet now? what you eat ?

thanks a lot: Elisabet

Hi Elisabet,

Sorry I did not get back to you sooner. I did get the pm...there's nothing wrong with your account. :)

Nothing has changed with my diet. Its still very restricted.

I've been eating pretty much the same safe foods for a long time now. Thats organic grass fed beef, oraganic frozen peas and frozen cauliflower. Thats really all I can eat on a daily basis without having reactions.

I do eat other things here and there but I usually react to some extent...especially if I overdo it. Today I ate a ton of salsa and chips but its not something I do on a regular basis.

Yesterday I ate Whole Foods Gluten Free Bakehouse banana bread (I pick the nuts out). So I do eat random "goodies" knowing that I'll react a little but hey....I gotta survive. :)

I dont focus much on my diet...I just eat what I can and focus more on the underlying issues. I knew I had mercury toxicity but it took awhile to get alot of testing done and to get a full picture.

I wasnt well enough to start chelation therapy last year but after working with my Dr.'s I'm doing MUCH better and finally ready for chelation.

I have the mercury burden as well as the gut infections and other problems that go with it. The food inolerances arent going to improve until I start getting rid of the mercury and can successfully treat these infections (yeast has been a big problem).

So for now my diet is still very restricted. If all goes well this might be my last holiday season dealing with so many dietary restrictions. :)

Theres some info on the oxalate thread which might be helpful to you.

The low oxalate diet seems to helping alot of people....I'm not sure how much its helped me but I do avoid the high oxalate foods as most of them are problematic for me.

You can find that thread in this forum (Other Food Intolerance/Leaky Gut Issues).

Anonymousgurl Contributor

Hi Elisabet and Rachel,

Elisabet- Do you have an extremely limited diet as well?

I just thought I'd post to let you guys know that you're definitely not alone...I'm VERY restricted when it comes to my diet as well. My diet consists of beans (only 4 different types), some vegetables (not avacado, my diet has to be fat free) and 2 different brown rice products (dry cereal and pancake mix, made with water). I also eat some fruits, like blueberries and apples but I'm pretty sure I react to them. I react everyday...but like you said Rachel...ya gotta survive! So I feel your pain Rachel, sorry that you've got to go through the same thing! I always hate to hear that someone else has to deal with what I have to deal with, but then again it is comforting at the same time.

But anywho, I'm not sure if you remember Rachel, but we talked before about bioSET and accupressure for food sensitivities. Are you still doing that? How's that going? We have such similar issues, it's very interesting. All of my problems stemmed from heavy metal toxicity as well (Mercury, Arsenic, Aluminum, etc.) and then manifested through Babesia, gall bladder issues, wacky hormone levels, etc.

My body is too weak for chelation as well. Tried it, let's just say that DIDN'T go well. haha. But now I'm undergoing the Methylation process with B12, Glutathione, TMG, DMG, and Sam-e. Right now I'm only on B12 and Glutathione because the TMG and DMG took a lot out of me. Including some metals though, yay!

How are things going for you?

Rachel--24 Collaborator

Hi Peace!!

Of course I remember you. :)

I'm actually doing pretty well despite the restricted diet. I've made alot of improvements...I surprised the Dr.'s even!! :)

I'm not doing BioSET at this time...its been several months since I've gone. The intolerances are a result of my toxicity...so I figure as long as the metals are there things arent going to drastically improve as far as that goes. I would most likely not be able to hold my treatments because I'm still very toxic.

I didnt have many treatments for food sensitivities because I didnt feel I would benefit at that time....my Dr. didnt feel it would help much either. Most of my treatments were focused on the detox pathways and desensitization of metals and fungal issues.

I'll be getting the results of my first DMPS provoked urine test on Monday. It took a year for my Dr. to give the green light for the test since I was so toxic and so reactive.

Yeah....chelation wont go well if your body isnt ready for it...thats why my Dr.'s wouldnt even try it until I got alot better. I started on DMSA (2 months ago) but hopefully I'll be switching to IV DMPS soon. I'll find out on Monday if my Dr. thinks I'm ready for that.

I was doing methyl B12 shots for a few months....along with other supplements to improve methylation. I take glutathione as part of my detox protocol. I'm also still taking antimicrobials, antifungals, antiparasitics, etc...to deal with the infections.

The main thing is getting the metals out....until then I cant really resolve anything. I'm feeling pretty good in the meantime (as long as I stick to my few safe foods). :)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,556
    • Most Online (within 30 mins)
      7,748

    Rachel Wilson
    Newest Member
    Rachel Wilson
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.