Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Finally The Gi And I Are On The Same Page

janelyb

Recommended Posts

janelyb Enthusiast
janelyb
Posted

So our last visit to the GI in April she didn't think he was celiac or gluten intollerent for that. She said put him back on gluten. I didn't listen to her and I kept him off gluten and then took out dairy too.

Well today we went for our follow up and I told her how great he was doing on the Gluten-free Casein-free diet and how his rash went away, how his appetite has increased,he's growing, etc etc.....I showed her our genetic testing from enterolab. And guess what she said that is great if the diet is working keep gim on it! Then she proceeded to tell me the IGG test that she did that was "false Positive"(her words) is actually an indicator of early signs of celiac. She did say the only way to know for sure is biopsy but she didn't suggest we go that route unless we really wanted too. I said no way, this is proof to me! Oh she did say I might want to challenge it to see if he reacts to all gluten, I told her we've already accidentally done that and that is proof to me! So awesome she agrees with me,can't wait to tell me local Celiac group who are having problems with her

She agreed and we have a follow up in 4 months.

So in 2 months he has gained 2 pounds and grown about 1.5 inches!

ETA: She even said Gluten Free is much healthier way to eat! Whoo hoo!

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

Celiac.com Sponsor (A8-M):


sjust Apprentice
sjust
Posted

I am so glad you got good results. We went to see the G/I today and really did not get anywhere. Rebecca is not loosing weight and has dropped to the 1% for weight. He is doing RAS testing and wants me to supplement but I don't know what to do. I am trying to get into Stanford now.

Sarah

janelyb Enthusiast
janelyb
Posted
  • Author
I am so glad you got good results. We went to see the G/I today and really did not get anywhere. Rebecca is not loosing weight and has dropped to the 1% for weight. He is doing RAS testing and wants me to supplement but I don't know what to do. I am trying to get into Stanford now.

Sarah

Oh no, the lowest we've ever gotten was about 5%. For the past year or so he's been following his own curve at a steady 25%. So does he have to reffer you to Standford or the primary? Good luck I hope you get in quickly.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      125,956
    • Most Online (within 30 mins)
      7,748
    Bobbyks69
    Newest Member
    Bobbyks69
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.1k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Refractory or super sensitive?

      By knitty kitty · Posted

      @glucel, I agree with @trents.  You can still do the AIP diet while taking aspirin.   I'm one of those very sensitive to pharmaceuticals and have gotten side affects from simple aspirin.  Cardiac conduction abnormalities and atrial arrhythmias associated with salicylate toxicity https://pubmed.ncbi.nlm.nih.gov/3952006/ Another part of the problem is that those drugs, aspirin and warfarin, as well as others, can cause nutritional deficiencies.  Pharmaceuticals can affect the absorption and the excretion of essential vitamins, (especially the eight B vitamins) and minerals.   Potential Drug–Nutrient Interactions of 45 Vitamins, Minerals, Trace Elements, and Associated Dietary Compounds with Acetylsalicylic Acid and Warfarin—A Review of the Literature https://pmc.ncbi.nlm.nih.gov/articles/PMC11013948/   Aspirin causes a higher rate of excretion of Thiamine Vitamin B1.  Thiamine deficiency can cause tachycardia, bradycardia, and other heart problems.  Other vitamins and minerals, like magnesium, are affected, too.  Thiamine needs magnesium to make life sustaining enzymes.  Without sufficient Thiamine and magnesium and other essential nutrients our health can deteriorate over time.  The clinical symptoms of Thiamine deficiency are subtle, can easily be contributed to other causes, and go undiagnosed because few doctors recognize Thiamine deficiency disorders. Thiamine deficiency disorders: a clinical perspective https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/ Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ Celiac Disease causes malabsorption of vitamins and minerals.  Supplementing with essential vitamins and minerals can boost absorption.   Our bodies cannot make vitamins and minerals.  We must get them from our diet.  The Gluten free diet can be low in Thiamine and the other B vitamins.  Gluten free processed foods are not required to be enriched nor fortified with vitamins and minerals like their gluten containing counterparts. You would be better off supplementing with essential vitamins and minerals than taking herbal remedies.  Turmeric is known to lower blood pressure.  If you already have low blood pressure, taking turmeric would lower it further. Curcumin/turmeric supplementation could improve blood pressure and endothelial function: A grade-assessed systematic review and dose-response meta-analysis of randomized controlled trials https://pubmed.ncbi.nlm.nih.gov/38220376/ I've taken Benfotiamine for ten years without any side effects, just better health. Other References: Association of vitamin B1 with cardiovascular diseases, all-cause and cardiovascular mortality in US adults https://pmc.ncbi.nlm.nih.gov/articles/PMC10502219/ Prevalence of Low Plasma Vitamin B1 in the Stroke Population Admitted to Acute Inpatient Rehabilitation https://pmc.ncbi.nlm.nih.gov/articles/PMC7230706/ Bradycardia in thiamin deficiency and the role of glyoxylate https://pubmed.ncbi.nlm.nih.gov/859046/ Aspirin/furosemide:  Thiamine deficiency, vitamin C deficiency and nutritional deficiency: 2 case reports https://pmc.ncbi.nlm.nih.gov/articles/PMC9023734/ Hypomagnesemia and cardiovascular system https://pmc.ncbi.nlm.nih.gov/articles/PMC2464251/ Atypical presentation of a forgotten disease: refractory hypotension in beriberi (thiamine deficiency) https://pubmed.ncbi.nlm.nih.gov/31285553/
    • Wheatwacked
      Muscle atrophy in legs

      By Wheatwacked · Posted

      Polymyositis is a rare autoimmune disease that makes your immune system attack your muscles. Any autoimmune disease is associated with low vitamin D.   Even as a kid I had weak legs.  Now I feel the burn just walking to the mailbox. A case-control study found that patients with polymyositis (PM) had higher lactate levels at rest and after exercise, indicating impaired muscle oxidative efficiency. The study also found that an aerobic training program reduced lactate levels and improved muscle performance.
    • Wheatwacked
      2 months in... struggling with symptoms

      By Wheatwacked · Posted

      Micronutrient Inadequacies in the US Population "A US national survey, NHANES 2007-2010, which surveyed 16,444 individuals four years and older, reported a high prevalence of inadequacies for multiple micronutrients (see Table 1). Specifically, 94.3% of the US population do not meet the daily requirement for vitamin D, 88.5% for vitamin E, 52.2% for magnesium, 44.1% for calcium, 43.0% for vitamin A, and 38.9% for vitamin C. For the nutrients in which a requirement has not been set, 100% of the population had intakes lower than the AI for potassium, 91.7% for choline, and 66.9% for vitamin K. The prevalence of inadequacies was low for all of the B vitamins and several minerals, including copper, iron, phosphorus, selenium, sodium, and zinc (see Table 1). Moreover, more than 97% of the population had excessive intakes of sodium, defined as daily intakes greater than the age-specific UL" My Supplements: Vitamin D 10,000 IU (250 mcg) DHEA 100 mg  (Dehydroepiandrosterone (DHEA) levels in the body decrease steadily with age, reaching 10–20% of young adult levels by age 70. DHEA is a hormone produced by the adrenal glands that the body uses to create androgens and estrogens.) 500 mcg Iodine 10 drops of Liquid Iodine B1 Thiamin 250 mg B2 Riboflavin 100 mg B3 Nicotinic Acid 500 mg B5 Pantothenice Acid 500 mg Vitamin C 500 mg Selenium twice a week 200 mcg
    • Wheatwacked
      Refractory or super sensitive?

      By Wheatwacked · Posted

      The paleo diet is based on the idea that the human body evolved to consume a balanced ratio of omega-6 and omega-3 fatty acids, and that the modern diet is out of balance. A healthy ratio of omega-6 to omega-3 is 1:1–4:1, while the modern diet is closer to 20:1–40:1. The paleo diet aims to restore this balance.
    • Wheatwacked
      Hey all!

      By Wheatwacked · Posted

      Best thing you can do for them! First-degree family members (parents, siblings, children), who have the same genotype as the family member with celiac disease, have up to a 40% risk of developing celiac disease. Make sure you and they get enough vitamin D and iodine in their diet.   Iodine deficiency is a significant cause of mental developmental problems in children, including implications on reproductive functions and lowering of IQ levels in school-aged children. Vitamin D deficiency is common in the United States, affecting up to 42% of the population.
×
×
  • Create New...