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

Possibly Celiac


AzSharouk

Recommended Posts

AzSharouk Newbie

My first post :) . I am going to the doctor Friday for my first discussion about my digestive/bloating/health problems as an adult. Ive had problems pretty consistently since 8/9 years old but always had doctors that didnt listen to me because I am seriously overweight. Havent had insurance in ages, but now I do fortunately.

I am not good about discussing things with doctors: they sort of steamroll over with me. Any suggestions on how I should approach this discussion. I have nearly all the symptoms, except weight loss and proven vitamin deficiencies (I supplement up the wazoo). I dont want to get trapped into thinking this is what I have and miss something else, but I also want to have a strong case for pursuing this. btw, my symptoms: extreme bloating (I can go up 2 clothes sizes in an afternoon!), abdominal pain, severe gas, c/d, hot/cold feelings, fatigue, foot/leg/hand numbness, muscle aches, mouth sores, tooth enamel loss/massive cavities, uncertain food sensitivities, lack of menstural cycle, allergic reactions and rashes to common products.

I think this fits celiac/gluten-intolerance pretty well but are there other things I should be looking at? Any suggestions would me appreciated! I want to be prepared with lots of questions and requests. Thanks


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



Celiac.com Sponsor (A8-M):



Jestgar Rising Star

You can always try the "I've been hearing a lot about this and I want to rule it out before doing more invasive tests" then ask for the whole Celiac panel.

gfp Enthusiast

You can additionally ask to have someone accompany you and make sure your not streamrolled....

ITs much easier for a MD to steamroll one person than when you have someone to back you up...

Remember its close to 1:100 people have it... so don't get fobbed off with "but its so rare" or "I don't think you have it" like Jestgar says either this or something else is wrong and this can be diagnosed with a simple blood test.

If the MD insists then ask what all the symptoms are... can he test for why you have .... (insert your list)...

Make sure you get a full panel and you need to be eating gluten for a month or so before hand to make sure...

Phyllis28 Apprentice

Write down you list of questions and concerns. I find this works well in making sure I sure I communicate everything I intend to.

rsm Newbie

I'll chime in, I just saw my GP yesterday. I told him I was trying the gluten free diet, gave him my family history and my daughters success story, his reply was "I'm impressed". He told me to keep on the diet and come talk to him in 3 months just to see how everything is going. He said he had sent several people for a Celiac biopsy in the last 20 years and they all came back negative. He also said he was sure there was a lot more of it out there than we realize.

I do have a question, I started gluten free 2 weeks ago, I felt great after the first 4 or 5 days but have really felt crappy for the last 3 days. As far as I know there has been no gluten, I even put the dairy away. Is this normal, do you go up and down for awhile?

Guest Karabear20
I'll chime in, I just saw my GP yesterday. I told him I was trying the gluten free diet, gave him my family history and my daughters success story, his reply was "I'm impressed". He told me to keep on the diet and come talk to him in 3 months just to see how everything is going. He said he had sent several people for a Celiac biopsy in the last 20 years and they all came back negative. He also said he was sure there was a lot more of it out there than we realize.

I do have a question, I started gluten free 2 weeks ago, I felt great after the first 4 or 5 days but have really felt crappy for the last 3 days. As far as I know there has been no gluten, I even put the dairy away. Is this normal, do you go up and down for awhile?

You know I was wondering the same thing because I felt better for a while, but then I felt worse...and now its getting better again. I am hoping that its just the process of my body going through such a change. I went from constant D to C and now im all gassy because im so empty and have been only eating fruit and meat because thats all i could keep down or that i wanted to eat in the past two days.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,600
    • Most Online (within 30 mins)
      7,748

    rita jean
    Newest Member
    rita jean
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
    • trents
      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
    • cristiana
      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
×
×
  • 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.