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

Can Anyone Help With Diagnosis?

sahmom4cj

Recommended Posts

sahmom4cj Newbie
sahmom4cj
Posted

Hey I'm 30 and for the past 2 1/2 years have been having a lot of symptoms. Long story short....I did some research and it sounded like celiac. So I went to the dr asking if he could test for it and he told me it wasn't that but did the celiac panel along with a bunch of other invasive tests. Celiac panel came back and one of my numbers (she said ttg something) is 100, while anything under 10 is normal. He ordered MORE blood work, nothing related to celiac and wants a colonoscopy and endoscopy.

I feel like I'm being violated for unnecessary reasons. Is it wrong if I just go with the blood work and do the diet and if that solves my symptoms then I'm good? Do I REALLY HAVE to have the stomach biopsy if my number on the blood work was so high? Colonoscopy....really?

THANK YOU for any advice you may have,

Christina

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

Celiac.com Sponsor (A8-M):


GFreeMO Proficient
GFreeMO
Posted

It is NOT wrong. It is YOUR body. You don't need a doctor to tell you what to eat or not eat.

Hornet Rookie
Hornet
Posted

I tend to have a more conservative approach. It's not a question of being wrong. It's a question of asking the MD why you need these tests, what will doing them tell you that is new or different and how they might change the outcome rather than just going on the diet. This is not a dx to fool around with. I am not a fan of any invasive tests, so I want reasons why they are medically necessary.

Just my 2 cents. I am at the beginning of figuring out my issues, but I will see a celiac specialist and listen to what they have to say before I decide how to proceed to help myself. Take deep breaths and try to lower your stress whenever you feel overwhelmed. Good luck.

robertwilburn35 Newbie
robertwilburn35
Posted

I agree that you should ask those why questions and will the test make a difference in treatment. Is the Dr concerened about results for some other reason than ciliac? I think to know the who,what, when why and where is prudent prior to deciding not to go through with the test. However I also agree that its your body your choice so if you dont like the answers or feel more comfortable with diet and waiting then if you have been informed its a good choice. Just make sure you are informed and ask the questions. by you stating that the dr said something about an ttg somthing is 100 says to me that you need to do a little more research and get more info.

nvsmom Community Regular
nvsmom
Posted

Celiac panel came back and one of my numbers (she said ttg something) is 100, while anything under 10 is normal. He ordered MORE blood work, nothing related to celiac and wants a colonoscopy and endoscopy.

IgA tTg is is what causes a cliac's body to attack itself when it is exposed to gluen; it's pretty specific to celiac. About 95% specific I believe, which means that out of 100 positive tTg test, about 95 would be celiac and the rest would be something else.

EMA is another test and it is virtually 100% specific to celiac... Did they test that too? I ask because I had a positive ttg and EMA so I don't feel the need for biopsy since the two blood tests which indicate intestinal damage came back positive. I'm willing to change my diet based on that. Is your doctor worried you won't adopt the diet based on those results?

Like the others said, I would talk with your doctor more. And best wishes to you. I hope you get answers and feel better soon.

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. xxnonamexx
      - xxnonamexx posted a topic in Related Issues & Disorders
      0

      Self Diagnosed avoiding gluten 7 months later (Not tested due to eating gluten to test) update and question on soy

      I know I haven't been tested but self diagnosed that by avoiding gluten the past 7 months I feel so much better. I have followed how to eat and avoid gluten and have been good about hidden gluten in products, how to prep gluten-free and flours to use to bake gluten-free and have been very successful. It has been a learning curve but once you get the hang...
    2. knitty kitty
      - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

      Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold. Our bodies have difficulty absorbing and utilizing it. Only 30% is absorbed and less can be utilized. There's some question as to how well multivitamins...
    3. Scatterbrain
      - Scatterbrain replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

      I am taking a multivitamin which is pretty bolstered with B’s. Additional Calcium, D3, Magnesium, Vit C, and Ubiquinol. Started Creapure creatine monohydrate in June for athletic recovery and brain fog. I have been working with a Nutritionist along side my Dr. since February. My TTG IGA levels in January were 52.8 and my DGP IGA was >250 (I don’t ...
    4. knitty kitty
      - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

      @Scatterbrain, What supplements are you taking? I agree that the problem may be nutritional deficiencies. It's worth talking to a dietician or nutritionist about. Did you get a Marsh score at your diagnosis? Was your tTg IgA level very high? These can indicate more intestinal damage and poorer absorption of nutrients. Are you eating...
    5. knitty kitty
      - knitty kitty replied to Larzipan's topic in Related Issues & Disorders
      34

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Vitamin and mineral deficiencies can make TMJ worse. Vitamins like B12 , Thiamine B1, and Pyridoxine B6 help relieve pain. Half of the patients in one study were deficient in these three vitamins in one study below. Malabsorption of vitamins and minerals is common in celiac disease. It's important to eat healthy nutrient dense diets like the Autoimmune...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,316
    • Most Online (within 30 mins)
      7,748
    RickT
    Newest Member
    RickT
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • xxnonamexx
      Self Diagnosed avoiding gluten 7 months later (Not tested due to eating gluten to test) update and question on soy

      By xxnonamexx · Posted

      I know I haven't been tested but self diagnosed that by avoiding gluten the past 7 months I feel so much better. I have followed how to eat and avoid gluten and have been good about hidden gluten in products, how to prep gluten-free and flours to use to bake gluten-free and have been very successful. It has been a learning curve but once you get the hang of it and more aware you realize how many places are gluten-free and contamination free practices etc. One thing I have read is how soy is like gluten. How would one know if soy affects you? I have eaten gluten free hershey reeses that say gluten free etc some other snacks say gluten free but contain soy and I dont get sick or soy yogurt no issues. Is there adifference in soys?
    • knitty kitty
      Feel like I’m starting over

      By knitty kitty · Posted

      Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold.  Our bodies have difficulty absorbing and utilizing it.  Only 30% is absorbed and less can be utilized.   There's some question as to how well multivitamins dissolve in the digestive tract.  You can test this at home.  YouTube has instructional videos.   Talk to your nutritionist about adding a B Complex.  The B vitamins are water soluble, so any excess is easily excreted if not needed.  Consider adding additional Thiamine in the forms Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) or thiamine hydrochloride.   Thiamine is needed to help control electrolytes.  Without sufficient thiamine, the kidneys loose electrolytes easily resulting in low sodium and chloride.   We need extra thiamine when we're emotionally stressed, physically ill, and when we exercise regularly, are an athlete, or do physical labor outdoors, and in hot weather.  Your return to activities and athletics may have depleted your thiamine and other B vitamins to a point symptoms are appearing.   The deficiency symptoms of B vitamins overlap, and can be pretty vague, or easily written off as due to something else like being tired after a busy day.  The symptoms you listed are the same as early B vitamin deficiency symptoms, especially Thiamine.  Thiamine deficiency symptoms can appear in as little as three days.  I recognize the symptoms as those I had when I was deficient.  It can get much worse. "My symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell." I took a B 50 Complex twice a day and extra thiamine in the forms Benfotiamine and TTFD.  I currently take the Ex Plus supplement used in this study which shows B vitamins, especially Thiamine B 1, Riboflavin B2, Pyridoxine B 6, and B12 Cobalamine are very helpful.   A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial https://pmc.ncbi.nlm.nih.gov/articles/PMC10542023/
    • Scatterbrain
      Feel like I’m starting over

      By Scatterbrain · Posted

      I am taking a multivitamin which is pretty bolstered with B’s.  Additional Calcium, D3, Magnesium, Vit C, and Ubiquinol.  Started Creapure creatine monohydrate in June for athletic recovery and brain fog.  I have been working with a Nutritionist along side my Dr. since February.  My TTG IGA levels in January were 52.8 and my DGP IGA was >250 (I don’t know the exact number since it was so high).  All my other labs were normal except Sodium and Chloride which were low.  I have more labs coming up in Dec.  I make my own bread, and don’t eat a lot of processed gluten-free snacks.
    • knitty kitty
      Feel like I’m starting over

      By knitty kitty · Posted

      @Scatterbrain, What supplements are you taking? I agree that the problem may be nutritional deficiencies.  It's worth talking to a dietician or nutritionist about.   Did you get a Marsh score at your diagnosis?  Was your tTg IgA level very high?  These can indicate more intestinal damage and poorer absorption of nutrients.   Are you eating processed gluten free food stuffs?  Have you looked into the Autoimmune Protocol Diet?  
    • knitty kitty
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      Vitamin and mineral deficiencies can make TMJ worse.  Vitamins like B12 , Thiamine B1, and Pyridoxine B6 help relieve pain.  Half of the patients in one study were deficient in these three vitamins in one study below. Malabsorption of vitamins and minerals is common in celiac disease.  It's important to eat healthy nutrient dense diets like the Autoimmune Protocol Diet, a Paleo diet that has similarities to the Mediterranean diet mentioned in one of the studies.   Is there a link between diet and painful temporomandibular disorders? A cross-sectional study https://pmc.ncbi.nlm.nih.gov/articles/PMC12442269/   Nutritional Strategies for Chronic Craniofacial Pain and Temporomandibular Disorders: Current Clinical and Preclinical Insights https://pmc.ncbi.nlm.nih.gov/articles/PMC11397166/   Serum nutrient deficiencies in the patient with complex temporomandibular joint problems https://pmc.ncbi.nlm.nih.gov/articles/PMC2446412/  
×
×
  • 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.