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 Celiac.com!
    eNewsletter
    Donate

Lab Testing Significance Question


amanda12

Recommended Posts

Gemini Experienced

NNowak......

Geez.......and I thought I had a bad experience!  ?. How horrible you had to endure such arrogance from the GI crowd!  Your post was well written and very typical of how people with potential Celiac are treated.  What is it about this diet that makes these doctors so resistant to obtaining a diagnosis?  Why do so many think all the symptoms have to be gut related?  

I got the eating disorder snarkiness too because I was always underweight.  I would tell them I eat like a lumberjack and still could not gain weight.  They always had an answer........you have a great metabolism!  Yeah, right.......I have Hashi’s thyroid disease.  Don’t think so.

Your advice is great and spot on!  It’s all about the research. Just learn the diet well and watch yourself get better.  The difference can be amazing!

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



  • Replies 54
  • Created
  • Last Reply

Top Posters In This Topic

  • amanda12

    21

  • Fenrir

    13

  • cyclinglady

    8

  • Gemini

    6

Top Posters In This Topic

  • amanda12

    amanda12 21 posts

  • Fenrir

    Fenrir 13 posts

  • cyclinglady

    cyclinglady 8 posts

  • Gemini

    Gemini 6 posts

GFinDC Veteran
13 hours ago, amanda12 said:

My PCP is great, but I don't get the idea he is comfortable managing celiac disease. I do know he have no trouble referring me out. I will keep looking for a doctor and hopefully I will find one that is good. Columbus is a large city, you would think it wouldn't be this hard!

Hi Amanda,

Hopefully you are on Facebook.  There is a gluten-free group on Facebook for the Columbus area.  I suggest joining that FB group and asking them for a doctor recommendation.

https://www.facebook.com/groups/320392650815/

The Gluten-Free Gang of Central Ohio

Link to comment
Share on other sites
NNowak Collaborator
10 hours ago, Gemini said:

NNowak......

Geez.......and I thought I had a bad experience!  ?. How horrible you had to endure such arrogance from the GI crowd!  Your post was well written and very typical of how people with potential Celiac are treated.  What is it about this diet that makes these doctors so resistant to obtaining a diagnosis?  Why do so many think all the symptoms have to be gut related?  

I got the eating disorder snarkiness too because I was always underweight.  I would tell them I eat like a lumberjack and still could not gain weight.  They always had an answer........you have a great metabolism!  Yeah, right.......I have Hashi’s thyroid disease.  Don’t think so.

Your advice is great and spot on!  It’s all about the research. Just learn the diet well and watch yourself get better.  The difference can be amazing!

Thank you, Gemini. 
I’m fortunate that the first 20 years of being a Celiac I was cared for by a smart OB/GYN. That practice respected the fact I do research, and was always willing to discuss my concerns. The changes in insurance mandated I have a primary care physician in 2017, in order to get to the bottom of my fall and obtain answers regarding my chronic pain. This is where the issues began. My poor sister has had 20 years of hardships with arrogant physicians, which results in very poor health and quality of life. 
 

I’m not shy, and I come prepared if I’m going to converse on a topic. These days docs simply want to take a 10 minute window with a “subject,” order up a bunch of tests and collect their money. There is zero follow up. It is utterly disgusting that the patients records are not referred to prior to their appointment, if at all - my time and quality of life is just as valuable as the docs.  Questions to gently put the docs on track are not appreciated by them. You know, the GI nurse actually asked me how often I force myself to vomit because I now have a hiatal hernia??  The lengths these practitioners go to in order to dismiss a patient is astounding.  I choose to find humor in it - what other profession allows the abuse of ill people (customers) to cover up incompetence/laziness??  
 

This is why I went to functional medicine for care. It cost 1/10th of what I’ve already paid to the docs and hospital - and I have a Dx!!  She also started me on low dose naltrexone (LDN) to “reset” my immune response. For those of you with a collection of chronic autoimmune issues, I HIGHLY recommend you research LDN as a possible treatment. 
 

We are all in the same boat and are blessed to have this forum to communicate and support each other. There is a lot of wisdom here!!  

Link to comment
Share on other sites
amanda12 Apprentice
11 hours ago, GFinDC said:

Hi Amanda,

Hopefully you are on Facebook.  There is a gluten-free group on Facebook for the Columbus area.  I suggest joining that FB group and asking them for a doctor recommendation.

https://www.facebook.com/groups/320392650815/

The Gluten-Free Gang of Central Ohio

Thank you! I was actually searching to see it there was a group in Central Ohio yesterday and much not of searched the right thing. Thanks for this info, I asked to join! Great asset on top of this forum.

Link to comment
Share on other sites
Gemini Experienced
12 hours ago, NNowak said:

Thank you, Gemini. 
I’m fortunate that the first 20 years of being a Celiac I was cared for by a smart OB/GYN. That practice respected the fact I do research, and was always willing to discuss my concerns. The changes in insurance mandated I have a primary care physician in 2017, in order to get to the bottom of my fall and obtain answers regarding my chronic pain. This is where the issues began. My poor sister has had 20 years of hardships with arrogant physicians, which results in very poor health and quality of life. 
 

I’m not shy, and I come prepared if I’m going to converse on a topic. These days docs simply want to take a 10 minute window with a “subject,” order up a bunch of tests and collect their money. There is zero follow up. It is utterly disgusting that the patients records are not referred to prior to their appointment, if at all - my time and quality of life is just as valuable as the docs.  Questions to gently put the docs on track are not appreciated by them. You know, the GI nurse actually asked me how often I force myself to vomit because I now have a hiatal hernia??  The lengths these practitioners go to in order to dismiss a patient is astounding.  I choose to find humor in it - what other profession allows the abuse of ill people (customers) to cover up incompetence/laziness??  
 

This is why I went to functional medicine for care. It cost 1/10th of what I’ve already paid to the docs and hospital - and I have a Dx!!  She also started me on low dose naltrexone (LDN) to “reset” my immune response. For those of you with a collection of chronic autoimmune issues, I HIGHLY recommend you research LDN as a possible treatment. 
 

We are all in the same boat and are blessed to have this forum to communicate and support each other. There is a lot of wisdom here!!  

NNowak.......you have hit the nail on the head with your critique of the medical profession as it stands today.  I understand there are many people today going to doctors but that is no excuse for doing business the way they do.  It is now quantity over quality and if you don’t have something that is easy to find, you are not going to get the help you need.

I, too, go to a functional medicine doctor for most of my needs.  Yes, I have to pay cash for her services but I get the help I need without a boatload of meds.  Plus, now I have a high deductible plan, like many people, so I still pay out of pocket for the mainstream crowd and get some help but not what it should be.  They have this protocol they follow and if you fall outside of that box, you have to be on your toes and advocate for yourself or good luck!

I have been on LDN for almost a year but have not found it to be that helpful for me.  From what I have learned, it works really well for pain issues.  Many people get great results with it.  Mine are not pain related so not sure if it will do the trick.  I am having some Sjogren’s flares at the moment, all from stress, and haven’t seen much in the way of results.  My niece, on the other hand, has Celiac and that elusive fibromyalgia, and she swears by LDN for pain relief.  I agree that anyone with pain should give it a whirl because there are no side effects from it.  

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,070
    • Most Online (within 30 mins)
      7,748

    TT24
    Newest Member
    TT24
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Fluka66
      Thank you again for your reply and comments which I have read carefully as I appreciate any input at this stage. I'm tending to listen to what my body wants me to do, having been in agony for many years any respite has been welcome and avoiding all wheat and lactose has thankfully brought this.  When in pain before I was seen by a number of gynacologists as I had 22 fibroids and had an operation 13 years ago to shrink them . However the pain remained and intensified to the point over the years where I began passing out. I was in and out of a&e during covid when waiting rooms where empty. My present diet is the only thing that's given me any hope for the future. As I say I had never heard of celiac disease before starting so I guess had this not come up in a conversation I would just have carried on. It was the swollen lymph node that sent me to a boots pharmacist who immediately sent me to a&e where a Dr asked questions prescribed antibiotics and then back to my GP. I'm now waiting for my hospital appointment . Hope this answers your question. I found out more about the disease because I googled something I wouldn't normally do, it did shed light on the disease but I also read some things that this disease can do. On good days I actually hope I haven't got this but on further investigation my mother's side of the family all Celtic have had various problems 're stomach pain my poor grandmother cried in pain as did her sister whilst two of her brother's survived WW2 but died from ulcers put down to stress of fighting.  Wishing you well with your recovery.  Many thanks  
    • knitty kitty
      Welcome to the forum, @Nacina, What supplements is your son taking?
    • knitty kitty
      @BluegrassCeliac, I'm agreeing.  It's a good thing taking magnesium. And B vitamins. Magnesium and Thiamine work together.  If you supplement the B vitamins which include Thiamine, but don't have sufficient magnesium, Thiamine won't work well.  If you take Magnesium, but not Thiamine, magnesium won't work as well by itself. Hydrochlorothiazide HCTZ is a sulfonamide drug, a sulfa drug.  So are proton pump inhibitors PPIs, and SSRIs. High dose Thiamine is used to resolve cytokine storms.  High dose Thiamine was used in patients having cytokine storms in Covid infections.  Magnesium supplementation also improves cytokine storms, and was also used during Covid. How's your Vitamin D? References: Thiamine and magnesium deficiencies: keys to disease https://pubmed.ncbi.nlm.nih.gov/25542071/ Hiding in Plain Sight: Modern Thiamine Deficiency https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/ The Effect of a High-Dose Vitamin B Multivitamin Supplement on the Relationship between Brain Metabolism and Blood Biomarkers of Oxidative Stress: A Randomized Control Trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6316433/ High‐dose Vitamin B6 supplementation reduces anxiety and strengthens visual surround suppression https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9787829/ Repurposing Treatment of Wernicke-Korsakoff Syndrome for Th-17 Cell Immune Storm Syndrome and Neurological Symptoms in COVID-19: Thiamine Efficacy and Safety, In-Vitro Evidence and Pharmacokinetic Profile https://pubmed.ncbi.nlm.nih.gov/33737877/ Higher Intake of Dietary Magnesium Is Inversely Associated With COVID-19 Severity and Symptoms in Hospitalized Patients: A Cross-Sectional Study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9132593/ Magnesium and Vitamin D Deficiency as a Potential Cause of Immune Dysfunction, Cytokine Storm and Disseminated Intravascular Coagulation in covid-19 patients https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7861592/ Sulfonamide Hypersensitivity https://pubmed.ncbi.nlm.nih.gov/31495421/
    • BluegrassCeliac
      Hi,   Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B  
    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
×
×
  • Create New...