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

Nutritionist Wwyd


nme23

Recommended Posts

nme23 Apprentice

I have been doing pretty well since my diagnosis back in September but still fighting fatigue and being hungry all the time. Think some of my other levels maybe off. So my question is. Is going to a nutritionist worth it to make sure I am getting everything I need?


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



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

If you know what you can and can't eat, my guess is that you won't get much from a nutritionist.

 

It might be better to see a doctor and get your nutrient levels tested, then treat those deficiencies.  The main ones to check are: K, Mg, Fe, D, B12, ferritin, A, Zn, Cu, and.... I'm forgetting something else. Hmm.  Anyway, If you know your low nutrients you can work on improving just those.

 

Best wishes.

sunny2012 Rookie

I have never found a nutritionist of much value. We Celiac's tend to know more about our diets than they do.

I'd see a doctor and get tested for the values noted above. Vit D and Iron are two that take a long time to recover. They can give you iron by IV if your numbers are not coming up.

 

Good luck

chocominties Rookie

I had to see a nutritionist after a blood test revealed low ferritin.  She gave me a list of what I should strive for as far as carbs, protein, calories, etc., suggested a particular multivitamin, and told me to avoid aluminum (found in baking soda, I guess).  

 

I don't know that it was terribly useful.  I was using MyFitnessPal to track my food, and found that it was super hard to make my diet line up with what she wanted me to be eating.  If I was eating enough carbs and protein I had too many calories, too much protein and not enough carbs, just enough fat but too much sugar, and so on.  I was in school and working, as well as living in a shared house with 10 other people, so getting good nutrition began to feel like another job.  Maybe someone else with different circumstances would get more from it.  

cristiana Veteran

I agree with nvsmom, getting your levels checked would be valuable - here in the UK I was offered ferritin, B12 and D.  Ferritin was very low.  B12 borderline, D OK.   Long and the short of it is I have had so much more energy since taking iron supplements and B12.  

I saw two nutritonalists and the private one was brilliant.  She told me to make sure I have lots of quality protein - chicken, eggs and tinned oily fish.  That really has helped with hunger pangs.

cap6 Enthusiast

You probably need all of your levels checked, especially iron and B12's. I hasve seen two different nutritonalist, one was no good. She gave me pages she had printed off the internet. The other one was excellent but she was part of the Warren Celiac Foundation in San Diego so she knew celiac. I think it depends on who and where you can find one. You can prob get as much info on the internet.

sunny2012 Rookie

Hubby reminded me of the appointment that we were both required to attend before they would release me from hospital (granted it was several decades ago). During it, the nutritionist actually suggested that if I needed to "drop a few pounds", I could eat gluten for a week. Many of her clients used that "trick" to lose weight. And I should consider myself "lucky" to have such an easy way to lose weight.

 

Maybe that should be in a "Horror Stories" type category.


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



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

Hubby reminded me of the appointment that we were both required to attend before they would release me from hospital (granted it was several decades ago). During it, the nutritionist actually suggested that if I needed to "drop a few pounds", I could eat gluten for a week. Many of her clients used that "trick" to lose weight. And I should consider myself "lucky" to have such an easy way to lose weight.

 

Maybe that should be in a "Horror Stories" type category.

  :angry:  :wacko:  :blink:  No!  Grrrrr. How irresponsible of that nutritionist.  Disgusting advice - Make yourself sick the lose a few?  Sheesh!!  <_<

LauraTX Rising Star

Hubby reminded me of the appointment that we were both required to attend before they would release me from hospital (granted it was several decades ago). During it, the nutritionist actually suggested that if I needed to "drop a few pounds", I could eat gluten for a week. Many of her clients used that "trick" to lose weight. And I should consider myself "lucky" to have such an easy way to lose weight.

 

Maybe that should be in a "Horror Stories" type category.

 

What..... the......  whatt.......  wow. Wow.  Definitely a horror story.

C-Girl Contributor

I had good luck with the nutritionist when I was first getting started, but I'd been having a ton of problems which I found out later were due to microscopic colitis in addition to the celiac disease. A lot of the nutritionist's advice was geared toward eliminating symptoms, not fighting fatigue. I'd see your GP to get your blood tested for your vitamin levels before assuming that it's deficiency at the root of your fatigue and not something else.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,547
    • Most Online (within 30 mins)
      7,748

    gizmo1jazz2
    Newest Member
    gizmo1jazz2
    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.