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

Does Anyone Feel Good


ikayak

Recommended Posts

GlutenFreeManna Rising Star

Yes I have had my thyroid check. Nothing abnormal. I keep a strict gluten free diet, Its hard to get doctors to get the test I want, I request it and the always tell me I am not being completely gluten free and I don't have problems because I am young. I am not too young anymore and I don't get why doctors treat me like I have lost my mind. I want to record my conversations with doctors, to document them. I have left my last 4 doctors for lack of patient care. Its frustrated.

I have had lots of frustating doctor's visits too. Don't give up. There are some good doctors out there they are just few and far between, especially when you don't have insurance. How recently did you have your thyroid checked? you should be screened every year and they should not just do the typical screening but should order a more in depth panel. Go to the doctors that last tested you and get a copy of all test results for your records. That way you know exactly which tests were run and wha tthey said. Knowledge is power when you go into a drs office. Write down all your questions and everythign you want to tell your doctor before you go in and you will be less likely to get emotional about it. I understand getitng frustrated and I have broken down in tears before when a doctor told me things like: "you just need to exercise more and eat whole wheat bread". then because i was crying they offered anti-depressants. :blink: Many here have had a similar experience. Did these docotrs that told you you were not following the diet correctly ask you what you eat? Or were they telling you the tests still come back with positive antibodies?


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



Celiac.com Sponsor (A8-M):



Crystal17 Newbie

I have had lots of frustating doctor's visits too. Don't give up. There are some good doctors out there they are just few and far between, especially when you don't have insurance. How recently did you have your thyroid checked? you should be screened every year and they should not just do the typical screening but should order a more in depth panel. Go to the doctors that last tested you and get a copy of all test results for your records. That way you know exactly which tests were run and wha tthey said. Knowledge is power when you go into a drs office. Write down all your questions and everythign you want to tell your doctor before you go in and you will be less likely to get emotional about it. I understand getitng frustrated and I have broken down in tears before when a doctor told me things like: "you just need to exercise more and eat whole wheat bread". then because i was crying they offered anti-depressants. :blink: Many here have had a similar experience. Did these docotrs that told you you were not following the diet correctly ask you what you eat? Or were they telling you the tests still come back with positive antibodies?

They told me this based on my symptoms only. very very few doctors want to run test, they do the initial one at my first visit or they only look at my records from the previous one. I had one doctor constantly putting me on different medication "try this for 2 weeks and see how you feel. The last medicine for my nausea actually made me throw up every morning. I like domperidome but Its difficult to get from Canada. I am going to go dairy free and nightshade free and hopefully cutting out more food will make a better difference. I routinely get my thyroid check every year for diabetes for the last 23 years as well so I am not too worried about it. Thanks for your encouragement, it means a lot because I do not have a support system at home.

GlutenFreeManna Rising Star

They told me this based on my symptoms only. very very few doctors want to run test, they do the initial one at my first visit or they only look at my records from the previous one. I had one doctor constantly putting me on different medication "try this for 2 weeks and see how you feel. The last medicine for my nausea actually made me throw up every morning. I like domperidome but Its difficult to get from Canada. I am going to go dairy free and nightshade free and hopefully cutting out more food will make a better difference. I routinely get my thyroid check every year for diabetes for the last 23 years as well so I am not too worried about it. Thanks for your encouragement, it means a lot because I do not have a support system at home.

Well that's no good. A follow up celiac test would show how well you are following the diet. A good doctor would be testing you for other things if it's not celiac related OR talkign to you about the possibility of refractory celiac, which is very, very rare but I have seen at least one person on here have it. Refractory celiac is celiac that does not respond to a gluten free diet. It's more likely to be other food intolerances, cross contamination in your food or another auto-immune disease however. If you don't already, you should keep a food and symptom journal to try to see if you can see any patterns in your symptoms. Since food intolerance symptoms could show up anywhere from 20 minutes to a few days after you eat something it's best to write it all down. I hope you can figure it out with your elimination diet.

gary'sgirl Explorer

Have any of you looked into the Specific Carbohydrate Diet?

After going gluten free I was finding more and more things that I seemed to be intolerant of. It got to the point were I couldn't eat any types of meat, no nightshades and I had to take out more and more grain options and the list kept going.

I didn't have any improvement until I tried the SCD. Within a couple of weeks I was able to start slowly adding meat back into my diet and slowly have been able to add some of the other foods as well.

If you are not getting better after going gluten free I would highly encourage looking into the diet. The science behind it makes a lot of sense and it was originally designed for people suffering from Celiac disease although many other intestinal diseases are also treated with it now (one being leaky gut issues).

WhenDee Rookie

Before I knew I had Celiac's I tried the Eat to Live "diet" (I hate to call it that) from Dr. Fuhrman's book of the same name. I had figured out it was something in my diet, was desperate to feel better and thought I had tried everything else, and I couldn't imagine anything more restrictive than vegan.

What I found is that I felt FANTASTIC eating that way. AMAZING. And even after going gluten-free a few months later, I never felt quite so good. So I'm back to Eat to Live. It is super-healthy, easy to stay gluten-free, and I feel every day like I could run a marathon. Not to mention the weight loss... I find that every time I get "glutened" it is because I deviated from my diet to try something special.

Fatigue was my worst symptom from the gluten days. Even before the acid reflux, the migraines, and the vitamin deficiencies showed up, I was just darn tired all the time. How can you have energy with no nutrition? Have you focused on super nutrition yet?

Since improving my diet I have found that even as I crave sugar, if I eat it I feel like trash for about a whole day afterwards. Caffeine is a killer, too. I'm pretty happy my body gives me such clear signals about how it's really doing - some people eat badly for decades before it just kills them. My body won't let me do that.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748

    Blough
    Newest Member
    Blough
    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.