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

Is My Doctor Just Making This Up?


cdog7

Recommended Posts

cdog7 Contributor

I'm still trying to find out if I am Celiac or not, but so far signs point to yes. My mother was diagnosed, and I'm currently suffering from the same symptoms she had (diarrhea, fevers, fatigue, weight gain, frequent gas, malnutrition symptoms, depression, etc.). But when I see my doctor, he says the only Celiac-like symptom I have is the diarrhea, which he says isn't even quite 'it'. He insists that I should be losing weight rapidly and have a much lower iron count if I were Celiac. Just yesterday I was able to twist his arm into giving me the antibody blood test, so we'll see what that brings.

What do you all think, do I need a new doctor or does this guy sound on the level? If I need someone new, it would have to be in Maryland, hopefully near Baltimore.


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



Celiac.com Sponsor (A8-M):



AllisonD128 Newbie

Well have you tried going gluten free just to see if you feel better? I never went to a doctor, I just changed my diet and felt better. I would listen to how I feel over what my doctor says any day. I've had more than one doctor give me a wrong diagnosis or ignore my symptoms and now it's almost like you have to do your own research and be your own doctor. But, also it won't hurt to get a second opinion, right? Maybe going a GI would be better for you.

RiceGuy Collaborator

The previous poster took the words out of my mouth. Try the diet, and if you want tests, get a new doctor.

Ursa Major Collaborator
diarrhea, fevers, fatigue, weight gain, frequent gas, malnutrition symptoms, depression

All of the above are common celiac disease symptoms, including the weight gain. Your doctor doesn't know what he is talking about.

Half of the people with celiac disease will gain weight, not lose it, as weight gain can also be a sign of malnutrition. And again, anemia is one POSSIBLE symptom of celiac disease, but not nearly all of us have that problem.

To claim you can't have it because you don't have the symptoms your doctor focuses on (out of over two hundred possible symptoms) is just plain ignorance.

cruelshoes Enthusiast

You may want to point your doctor toward this information:

https://www.celiac.com/articles/1077/1/39-o...bese/Page1.html

Celiac.com 11/29/2006
cdog7 Contributor
Well have you tried going gluten free just to see if you feel better?........ But, also it won't hurt to get a second opinion, right? Maybe going a GI would be better for you.

I was nervous about going gluten-free just yet because I know it could skew test results. Since I've missed so much work from being sick so often, I'd love to get a doctor's diagnosis to show my boss. But good idea to go to a GI. Thanks!

cdog7 Contributor
Your doctor is only working with what he learned in medical school, much of which has been shown to be untrue in recent years.

Thanks for the links!! It makes me pretty mad. I told my mother what he said and she suggested posting here


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



Celiac.com Sponsor (A8-M):



nikky Contributor

weight loss and weight gain can both be symptoms, so dont worry, a lot of family doctors arent very familiar with coeliac

its good that you finnally got your doctor to agree to give you the anti-body checks, many people do get low iron counts and low calcium and things like that, i had iron deficency anemia but my calcium is always high (i recently discovered i have hypercalcemia), which shows that just because you have coeliac doesnt mean that you have to have vitamin and/or mineral dificiencies

buffettbride Enthusiast

Your doctor, like many, isn't quite on. If diarrhea and rapid weight loss were the only symptoms, my daughter never would have been diagnosed--and if so, much later after malnutrition had stunted her growth severely.

I'm glad you were able to convince him to run the antibody test. The first indicator to a doctor, IMO, about running Celiac tests would be to know if there is a family history of the disease since it is so genetically linked.

Anyawy, don't hesitate to look for another doctor if you don't feel you are getting the care you want and deserve--whether Celiac is your diagnosis or not.

jayhawkmom Enthusiast

I'm one of those who were "nutritionally compensated."

I could NOT lose weight for the life of me, UNTIL I started a gluten free diet. I carried around extra and unnecessary weight for a very long time. Going gluten free finally ALLOWED my body to shed the extra is was hanging on to for dear life.

Your doctor is wrong. Period.

JulesH Rookie

My idiot GI actually told me that I "probably have a mild case" and therefore should eat some gluten, just not a lot. (I dropped him after he told me that.) But his reasoning was that I weighed more than 70 lbs. And I even had lost weight. Apparently dropping 15 lbs in 2 weeks isn't enough to be considered a real case. :rolleyes:

mamabear Explorer
I was nervous about going gluten-free just yet because I know it could skew test results. Since I've missed so much work from being sick so often, I'd love to get a doctor's diagnosis to show my boss. But good idea to go to a GI. Thanks!

Hate to rain on your parade, but I have found WAY too many GI specialists who cannot think outside the box, and if the tTA is not positive, they abandon further thought. Alas, also too many FP's and IM's have not taken the time to read about THE MOST COMMON DISEASE OF MALABSORPTION in the Western Hemisphere!! There truly are more educated people on this Forum than in the AMA.

BUT! Not to be too negative.....go on and see a GI, but check with a local celiac group for specific doctor recommendations. They should know best in you area WHO will take thye time and listen.

cyberprof Enthusiast
I'm still trying to find out if I am Celiac or not, but so far signs point to yes. My mother was diagnosed, and I'm currently suffering from the same symptoms she had (diarrhea, fevers, fatigue, weight gain, frequent gas, malnutrition symptoms, depression, etc.). But when I see my doctor, he says the only Celiac-like symptom I have is the diarrhea, which he says isn't even quite 'it'. He insists that I should be losing weight rapidly and have a much lower iron count if I were Celiac. Just yesterday I was able to twist his arm into giving me the antibody blood test, so we'll see what that brings.

What do you all think, do I need a new doctor or does this guy sound on the level? If I need someone new, it would have to be in Maryland, hopefully near Baltimore.

I am on the other side of the country, but if you need Baltimore, you are very lucky Open Original Shared Link

Dr. Fasano is there and the center is supposed to be good.

~Laura

Katrinm Newbie

The same thing happened to me. I went to a food allergist and he said because I had weight on that I couldn't be celiac. Even though I told him that the weight gain had happened in the last four or so years with a lot of the other symptoms.

One thing I did after that allergist is keep a food log. Everything that went in my mouth and how much I exercised was put on an excel sheet. This way I could hand it to the doctors and show them my concern.

Its so frustrating but you have to be aggressive with the doctor and do a lot of self help.

Guest Happynwgal2
I was nervous about going gluten-free just yet because I know it could skew test results. Since I've missed so much work from being sick so often, I'd love to get a doctor's diagnosis to show my boss. But good idea to go to a GI. Thanks!

I was tested a full month AFTER I went gluten free, and my test results were so off the page that there was NO DOUBT that I was gluten intolerant, or rather, I was a Celiac. So if you are sick enough, like I was, a blood test could be positive even after a month off gluten.

Good luck! :)

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. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      1

      New issue

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

      Blood Test for Celiac wheat type matters?

    3. - trents replied to Charlie1946's topic in Related Issues & Disorders
      38

      Severe severe mouth pain

    4. - knitty kitty replied to Charlie1946's topic in Related Issues & Disorders
      38

      Severe severe mouth pain

    5. - Caligirl57 replied to Charlie1946's topic in Related Issues & Disorders
      38

      Severe severe mouth pain

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

    • Total Members
      133,084
    • Most Online (within 30 mins)
      7,748

    BlueIcyRose
    Newest Member
    BlueIcyRose
    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

    • knitty kitty
      @Jmartes71, Sorry you've been feeling so poorly.   Are you taking any medication to treat the SIBO?   Are you taking any Benfotiamine?  Benfotiamine will help get control of the SIBO.  Thiamine deficiency has symptoms in common with MS. Have you had your gas appliances checked for gas leaks and exhaust fume leaks?  Carbon Monoxide poisoning can cause the same symptoms as the flu and glutening.  Doctors have to check venous blood (not arterial) for carbon monoxide.  Are other inhabitants sick, or just you?  Do they leave the house and get fresh air which relieves their symptoms?  
    • knitty kitty
      European wheat is often a "soft wheat" variety which contains less gluten than "hard wheat" varieties found in the States.   In European countries, different cooking methods and longer  fermentation (rising or proofing) times allow for further breakdown of gluten peptides. Wheat in the States is a blend of hard and soft wheat.  Gluten content can vary according to where the wheat was grown, growing conditions, when harvested, and local preference, so a blend of both hard and soft wheat is used to make a uniform product.   I moved around quite a bit as a child in a military family.  I had different reactions to gluten in different areas of the country every time we moved.  I believe some wheat breeds and blends are able to provoke a worse immune response than others.   Since European soft wheat doesn't contain as much gluten as American wheat, you may try increasing your intake of your soft wheat products.  A minimum of ten grams of gluten is required to get a sufficient immunological response so that the anti-gluten antibodies leave the intestines and enter the bloodstream where they can be measured by the tTg IgA test.  Your whole wheat bread may only have a gram of gluten per slice, so be prepared...  
    • trents
      From my own experience and that of others who have tried to discontinue PPI use, I think your taper down plan is much too aggressive. It took me months of very incremental tapering to get to the point where I felt I was succeeding and even then I had to rely some days on TUMS to squelch flareups. After about a year I felt I had finally won the battle. Rebound is real. If I were you I would aim at cutting back in weekly increments for two weeks at a time rather than daily increments. So, for instance, if you have been taking 2x20mg per day, the first week cut that down to 2x20mg for six days and 1x20 mg for the other day. Do that for two weeks and then cut down to 2x20mg for five days and 1x20 for two days. On the third week, go 20x2 for four days and 20x1 for 3 days. Give yourself a week to adjust for the reduced dosage rather than reducing it more each week. I hope this makes sense. 
    • knitty kitty
      Talk to your doctor about switching to an antihistamine, and supplementing essential vitamins and minerals.  Dietary changes (low carb/paleo) may be beneficial for you.  Have you talked to a dietician or nutritionist about a nutrient dense gluten free diet?   It's harder to get all the vitamins needed from a gluten free diet.  Gluten containing products are required to be enriched or fortified with vitamins and minerals lost in processing.  Gluten free facsimile processed foods are not required to be enriched nor fortified.  So we have to buy our own vitamin supplements.   Glad to be of help.  Keep us posted on your progress!
    • Caligirl57
      I’m pretty sure they do. I have been on myfortic, tacrolimus since 2021 for my liver transplant and added prednisone after kidney transplant.  I’m going to try to cut back omeprazole to 20 mg a day and then after a week try to stop altogether. Thank you for your help.
×
×
  • 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.