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

Qualified Doctor


Packard

Recommended Posts

Packard Newbie

I went to my gastro-enterologist with my symptoms of celiac. He spent 4 months and about every test imaginable to find a cause. He ordered tests of my liver and gall bladder; he ordered an MRI, tested for lactose intolerance. He ran out of tests and handed me off to an associate who suggested a low fiber diet.

I read an article in the local newspaper about celiac and I put myself on a gluten free diet and 2 days later I was symptom free.

My question is: is this a qualified doctor? I use him for my endoscopy's. If he missed the celiac (and I don't think he should have) should I trust him with the endoscopy's? Or should I be looking for another doctor?


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



Celiac.com Sponsor (A8-M):



DonnaD Apprentice
I went to my gastro-enterologist with my symptoms of celiac. He spent 4 months and about every test imaginable to find a cause. He ordered tests of my liver and gall bladder; he ordered an MRI, tested for lactose intolerance. He ran out of tests and handed me off to an associate who suggested a low fiber diet.

I read an article in the local newspaper about celiac and I put myself on a gluten free diet and 2 days later I was symptom free.

My question is: is this a qualified doctor? I use him for my endoscopy's. If he missed the celiac (and I don't think he should have) should I trust him with the endoscopy's? Or should I be looking for another doctor?

Hi Packard

You are lucky you stumbled on the answer so quickly. :P

I read that the average time taken to get a dx of celiac disease is 11 years and 15 doctors! for me it was all of my 42 years, rheumatologists, renal specialists, surgeons, pain clinic, de-nervation,physio x 5, 100s of doctors and I only realised what the cause of my problems were after my daughter (more classic symptoms) was dx in November and I found this board looking for food ideas for her. I soon realised that so many people on here had exactly the same pattern of progression, sl overweight, C, IBS, Fibro. So I paid for Enterolab tests (I had been wheat free so bloods would have been false-negative which is commom). I searched all my main symptoms here and soon realised my whole family had symptoms we had never even connected together.

You could look for another Doctor but I'm afraid if you read the experiances of others here they are all pretty hopeless. Most still think that unless you have the typical presentation of chronic D and have lost 15lbs it isn't possible to be celiac let alone any that will admit that gluten sensitivity, without villi damage, even exists! You could try and educate him but do check that he knows what to look for on the scope and takes enough biopsy samples or ask for reccomendations in your area from Others on the board who will be able to help you more with this as things done differently here in the UK.

Good luck!

Donna

happygirl Collaborator

I had a similar experience in terms of GI running all kinds of tests, and my mom was the one who suggested Celiac. He never had.

I personally would choose a different GI because presumably, this dr. is not well-educated about Celiac. Having a dr. who gives you mis-information is horribly frustrating. But, if he seems willing to learn and provides you of some help, then it may be a more difficult decision.

If you are on a gluten-free diet, an endoscopy and biopsy will probably not show damage. You need to be eating gluten to have an accurate biopsy (I learned this after my endoscopy, although my GI told me it was OK to go on the diet for 6 weeks before my procedure.)

CMCM Rising Star

My GP vaguely "knew what celiac was", and one day I walked into a GI's office (where I had had a colonoscopy 6 months ago) and asked about testing for celiac disease, and they scrambled around to find some sort of answer and finally came up with some vague statement about blood tests, and said "no, we don't have any celiac patients". Right then and there I decided not to go down that road if I didn't have to. It was obvious I would be getting into a very circular cycle of all sorts of expensive tests, and since I have a high deductible, it was mostly going to come out of my own wallet to pay for it all. So I decided to go the Enterolab route, and while the $350 is expensive, I think it will be money well spent and will certainly cost a whole lot less than all the traditional doctor searching would have cost. Besides, I don't have a lot of confidence in a doctor who actually knows less than I do about celiac disease! If I had found a knowledgeable doctor, it might have been different. By the time most of us find our way to this board, we have pretty much been taking the bull by the horns and trying to logically figure things our ourselves. The people I pity are the ones who remain clueless for a lifetime (that was ME!!! for 25+ years!!) because doctors are looking at virtually every possibility other than celiac! :angry:

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Son's legs shaking

    2. - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

    3. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Son's legs shaking

    4. - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

    5. - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748

    MaryannHall
    Newest Member
    MaryannHall
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
×
×
  • 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.