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

Panic ... Not Knowing Versus Knowing

LookingforAnswers15

Recommended Posts

LookingforAnswers15 Enthusiast
LookingforAnswers15
Posted

Hi all,

 

I have recently joined and posted a couple of times already because I am freaking out.I do not think I am strong enough to deal with another (possible) AI disease. I am in a bad place and I have never been so scared about my future.

 

As I said in previous posts, I am afraid to give you all of my symptoms (although I know you could be helpful but as I said, not having a doctor to consult me, it will freak me out even more) at least until I get to talk to a dr. I have been researching online a lot on my own and as I said I am already freaking out.

 

I managed to get an appointment with the gastro dr. that diagnosed me with celiac. The last time I saw her (last month-my yearly check up), she could not really tell me much because they forgot to test my blood for anti-bodies and celiac related tests(did not really explain what exactly). So, I did blood test again and then she sent me to do BMD and ultrasounds, which were ok. She asked me just to call her for the blood results and that we would meet after i complete these 2 tests. When I called her, she said the antibodies were still high but did not want to go into any details. I asked her if she would give me the results so that I could have them if i found a GP and she said it was not necessary to show them that. Now I am worried why she would not give them to me.

 

I am scared of Myasthenia gravis. I have not been tested for that and since she never explained what she tested me for, I began typing all the results and abbreviations online trying to figure it out. So last month she added additional tests, which included Crohn's and Graves (based on what I googled). My mom has Crohn's and i do not have those symptoms. 

 

So, I know that tests are not good based on that brief phone conversation, I feel like crap and terrified.  Some people say: things could be worse, try to be positive and I agree so I do not want to complain but I never ever thought I would have to be dealing with something like this. I am sure you understand this feeling as well.

 

Any recommendations on what to specifically ask her when I see her? I was going to ask her to confirm all AI tests she did and if I need more tests. Tuesday cannot come fast enough but then again, worried what my results will say =(.

 

 

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

Celiac.com Sponsor (A8-M):


mamaw Community Regular
mamaw
Posted

I  don't  have  answers  but I do  know  if  you  want  copies  of  any  testing  they  have to give  you copies.....whether  she  thinks  you need  them  or  not... Don't   let anyone  tell you  a patient  can't   have their  own  medical information....  some  placed  do  charge  for the  photocopy....

cyclinglady Grand Master
cyclinglady
Posted

First, take a deep breath and try to relax! There are benefits of consulting Dr. Google, but there are negative things too. Remember, it is just a tool and you are not a doctor!

It sounds like from your posts that your celiac antibodies are still high. Anxiety is one of the many celiac disease symptoms! It appears that you maybe getting glutened. I think you need to focus on that instead of worrying about another AI diseases. Remember that celiac can affect the muscular and nervous systems. So it is UNLIKELY that you have MG. I say that because you stated that your celiac antibodies continue to be high. Even if you do have it, again very UNLIKELY, there is no sense worrying about it (yeah, easier said than done when you are in the grips of celiac disease!).

I know you are not in the U.S., but try to get copies of your medical records. Take notes and ask to see lab results that you can take notes or a photo using your phone. Also see if a friend can attend your doctor's visit. When I was sick, it helped to have my engineering hubby take copious notes. I was too oxygen starved (anemic) to think clearly.

Look to your diet for possible glutenings. Yes, even lotions are suspect! Just chewing on your nails that have smeared with a gluten-containing lotion can make you sick. Search Google for things to watch out for like toasters, wooden spoons, non-stick pans. Check out our Newbie 101 section under "coping".

There is a huge learning curve and many (even a pro like me) can make mistakes.

Hugs!

nvsmom Community Regular
nvsmom
Posted

I too would get copies of all tests done.  Some doctors gloss over test results when some should warrant a closer look.  At the very least you can google the tests so you are better informed since you doctor seems to be going out of her way to keep you ignorant.  Sort of odd...

 

Celiac can mimic MANY diseases, and can continue to do so for a good year after starting the gluten-free diet.  I myself was convinced that I had lupus.  I had more than enough criteria to be diagnosed including weird arthritis that would flare up with flu-like symptoms and then leave after a few months with no after affects.  One of my most severe flare-ups happened after I had been gluten-free for 2 or so months, and it lasted 4 months.  I couldn't believe that it was celiac disease but those arthritis episodes slowly stopped happening over the next few years.  

 

Improvements  on the gluten-free diet can take a year or so.  If it is celiac disease related, you may just need time.

 

A friend of mine had issues with myasthenia gravis.  It affected her face and her eye drooped badly enough that she could not see out of that eye; she had to stop nursing for a while.  Doctors treated her with steroids for years and it helped some but not enough.  She eventually decided to change her diet - we are what we eat, right?  She went gluten-free, dairy-free, and ate only organic and as GMO free as possible.  The droop stopped within a year and has been gone for over a decade now.... If this is your problem, know that it can be treated (at least for some) although it isn't a quick fix.

 

Best wishes.

RMJ Mentor
RMJ
Posted

You know you have celiac, you know your antibodies are still high. Thus they could still be causing all of your symptoms. Celiac is associated with many diverse symptoms; here is a link with 300 symptoms from the University of Chicago Celiac center.

Open Original Shared Link

This paper describes a gluten contamination elimination diet. I am tryng it to see if it will bring my antibody levels down. I haven't had them remeasured yet, but after I started the diet I started to feel really good!

Open Original Shared Link

nvsmom Community Regular
nvsmom
Posted

That's true. My autoantibodies were still slightly elevated after 9 month gluten-free, which meant my intestines were still being attacked.  By 3 years gluten-free they were nice and low. (About a 4 with a ref range of 0-14... I think it was.)

LookingforAnswers15 Enthusiast
LookingforAnswers15
Posted
  • Author

I really appreciate your kind words and support. Bringing someone with me to the appointment could be a good idea but there are still finals at the university so I am not sure if my best friend will be able to come. I am really trying not to think about it but it is hard.

I will definitely ask her to print out all of my results for me. Once again, thank you! 

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing

  • 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. sc'Que?
      - sc'Que? commented on Celiac.com Sponsor: Review's article in Product Reviews
      1

      Bold Taste, No Alcohol & Crafted to Remove Gluten: Daura Non-Alc Beer Takes Alcohol-Free Beer to the Next Level

      @Daura Damm: Can we get a gluten-free Imperial Oatmeal Stout, please? Please?!?
    2. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet official, the Health Director of...
    3. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac...
    4. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together. Our bodies can make Taurine from meats consumed. Our bodies cannot make Thiamine and must consume thiamine from food. Meat is the best source of B vitamins like Thiamine. Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine...
    5. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      @Jmartes71, I went to Doterra's site and had a look around. The Doterra TerraZyme supplement really jumped out at me. Since we, as Celiacs, often have digestive problems, I looked at the ingredients. The majority of the enzymes in this supplement are made using black mold, Aspergillus! Other enzymes are made by yeast Saccharomyces! Considering...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,547
    • Most Online (within 30 mins)
      7,748
    GSward
    Newest Member
    GSward
    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

    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      Are Lindt chocolate balls gluten free?

      By RUKen · Posted

      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
×
×
  • 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.