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

Really Disappointed....

WinterSong

Recommended Posts

WinterSong Community Regular
WinterSong
Posted

I went in for my biopsy today. They put me under but halfway through they had to stop - apparently my stomach had too much food in it despite me not eating for six hours beforehand as directed (and I only ate a light snack). So I have to do it again next week. The nurse said that sometimes this happens...it was so disappointing....So for next week they said that I can't eat or drink for 12 hours beforehand....it's been such a stressful week, and I think I've worked myself up so much that I've just given myself a really bad stomach ache....I just want to be done with all of this testing and start getting better....

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

Celiac.com Sponsor (A8-M):


love2travel Mentor
love2travel
Posted

I feel for you. :huh: I had to fast for the colonoscopy and gastroscopy for 36 hours - I was only allowed clear liquids (i.e. water) and then nothing for 12 (had to drink a gallon of that stuff - forget the name of it). That wasn't bad. When I met with the surgeon five weeks later to discuss results he told me I still had a lot of stool in there! Weird. :blink:

You can do this! Hopefully you can get to the bottom of this very soon. :)

WinterSong Community Regular
WinterSong
Posted
  • Author

Thanks. My blood test as my doctor said "was VERY positive for Celiac", so he said that there is no doubt that I have it. He did tell me to begin my gluten-free diet, at least, so I'm happy about that. He just wants to see how much damage has been done and try to determine if I'm lactose intolerant, as well.

It's just been such a long week. I was only diagnosed last Friday, and I've barely slept because there's been so much to think about. And I have to pay for both tests out of my own pocket because my insurance isn't covering it. Most of all, I'm just so mentally and physically worn out.

Thank goodness for this forum. I'm just trying to be grateful for all of the people in my life who are my cheerleaders and supporting me in this.

love2travel Mentor
love2travel
Posted

It is incredibly stressful and that stress can take a toll on you, that is for sure. It sounds trite but it is so very true that time does make things a lot better. My diagnosis was in February and I went through many phases emotionally including shock (I am asymptomatic), denial, grief and so on, right up to acceptance which happened in the last couple of weeks. It is a huge lifestyle change. What I personally find difficult is changing my life when I have no symptoms but I know I must! Food is my obsession and eating out can be a nightmare (I have little trust for that). But cooking at home is another story, thankfully. :D

I'm so sorry your tests are not covered. :( The process is daunting and draining but soon it will be routine and a part of life. It really is a fact.

So, keep hanging in there and remember that this too shall pass. :)

ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks. My blood test as my doctor said "was VERY positive for Celiac", so he said that there is no doubt that I have it. He did tell me to begin my gluten-free diet, at least, so I'm happy about that. He just wants to see how much damage has been done and try to determine if I'm lactose intolerant, as well.

It's just been such a long week. I was only diagnosed last Friday, and I've barely slept because there's been so much to think about. And I have to pay for both tests out of my own pocket because my insurance isn't covering it. Most of all, I'm just so mentally and physically worn out.

Thank goodness for this forum. I'm just trying to be grateful for all of the people in my life who are my cheerleaders and supporting me in this.

I would call the insurance company to find out why they are not covering your tests. If you had very positive blood work and your doctor feels the need to do them they should be covered and by the time you add in the anesthesiologist, the doctors fees, the fees for the room and lab charges for the biopsy you are not talking pocket change. You may also want to talk to your doctor about it as he can also have a part in appealing the insurance companies decision not to cover. Since he considers you diagnosed with your blood test perhaps you could hold off on the endo safely to see if you issues resolve on the diet. Another option is to see if the facility might have a sliding fee scale that you can get on if your income isn't real high.

WinterSong Community Regular
WinterSong
Posted
  • Author

Thanks. Question - Even though my doctor says that I'm definitely positive, I'm kind of worried about getting a false negative on my biopsy. Would one week gluten-free make a huge difference in the results? I just want to be 100% sure of my diagnosis. Because the intestinal damage would still be there, right? If my blood tests are positive does that mean that I without question have Celiac?

WinterSong Community Regular
WinterSong
Posted
  • Author

Oh, and the reason why I'm paying out of pocket is that my insurance company has a $1,000 deductible. After I spend that myself, they'll begin paying 80%. Not the best plan. :-/

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

Celiac.com Sponsor (A8-M):


eatmeat4good Enthusiast
eatmeat4good
Posted

I think you are clearly and definitely Celiac. Your Dr. diagnosed you based on the high blood test. He may be one of the more proactive Dr.'s who are willing to diagnose based on blood tests alone. This is a good thing. The issue most people have is their Dr. won't diagnose them with Celiac without a positive biopsy, but in your case, you have the diagnosis and he is just wanting the biopsy to see how much damage has been done. Ask your Dr. if he is planning on taking back the diagnosis if you are biopsy negative, or if he understands that when you go gluten free healing will occur and you may test negative.

It sounds like you are firmly diagnosed, but only your Dr. can say if he is going to retract that diagnosis or let it stand regardless of the biopsy results.

WinterSong Community Regular
WinterSong
Posted
  • Author

Thanks for that reply, eatmeat4good. My doctor said that the count that the blood test measured (is it called a tTG? I'm not sure) - anyway, he said that my number is 300 and is WAY above the norm. And I've read that biopsies can sometimes come back with a false negative anyway. I have all of the symptoms, and if the doctor thinks that I'm that positive for it, then I'm just going to consider myself diagnosed.

Wow, I've just been feeling a lot of anxiety this week, so I've been questioning everything.

ravenwoodglass Mentor
ravenwoodglass
Posted

My doctor said that the count that the blood test measured (is it called a tTG? I'm not sure) - anyway, he said that my number is 300 and is WAY above the norm. And I've read that biopsies can sometimes come back with a false negative anyway. I have all of the symptoms, and if the doctor thinks that I'm that positive for it, then I'm just going to consider myself diagnosed.

Wow, I've just been feeling a lot of anxiety this week, so I've been questioning everything.

Glad you know that there is a chance of a false negative and you will be staying gluten free no matter what the biopsy results are. The anxiety you are feeling is pretty normal. You just got diagnosed with something that is life changing plus you have only been gluten free a week and may be experiencing withdrawl. If that deductable is going to be a hardship for you let your doctor know. You are really diagnosed already and some doctors are skipping the biopsy when blood results are as high as yours were.

WinterSong Community Regular
WinterSong
Posted
  • Author

I just spoke with my doctor, and he gave me the antibody levels for some of my blood work so that I could have them for my records:

tTG-IgA >300 Positive

EMA-IgA >1:320 Positive

Gliadin >400 (high)

Did I notate this properly?

PS Day #5 gluten-free and going strong! :)

ravenwoodglass Mentor
ravenwoodglass
Posted

I just spoke with my doctor, and he gave me the antibody levels for some of my blood work so that I could have them for my records:

tTG-IgA >300 Positive

EMA-IgA >1:320 Positive

Gliadin >400 (high)

Did I notate this properly?

PS Day #5 gluten-free and going strong! :)

Your results were really high from what I can see so hopefully you will be feeling better soon.

WinterSong Community Regular
WinterSong
Posted
  • Author

Your results were really high from what I can see so hopefully you will be feeling better soon.

Thanks. I'm actually glad they were so high. It makes me feel more confident about the diagnosis. I just hope that it doesn't mean my intestines have been incredibly damaged. But we'll find out soon. I'm excited to finally understand what's been going on. :)

MsCurious Enthusiast
MsCurious
Posted

Thanks. I'm actually glad they were so high. It makes me feel more confident about the diagnosis. I just hope that it doesn't mean my intestines have been incredibly damaged. But we'll find out soon. I'm excited to finally understand what's been going on. :)

That's great news JessicaNYC! I know there are people out there who have never dealt with all these crazy symptoms lots of us have had, and they would think it "odd" for someone to say ... hey you have a disease... great news! LOL BUT... you know what I mean. It's just a relief to know what it is, and that you can control it! That's a whole lot better than never knowing and still feeling yucky. :) Happy for ya. B)

WinterSong Community Regular
WinterSong
Posted
  • Author

Some good (and amusing) news:

I had my second endoscopy today, and it went very well! (I didn't eat for 15 hours beforehand, so I though "well this better work now!" haha) I woke up and the doctor said that from what he saw I had all of the internal signs of Celiac and that my biopsy results would be back in two weeks. I said that it was good to know I showed the signs since I know that my biopsy may produce a false negative having been on the diet for a week already. Then I told him about how I've been getting stomach aches after eating dairy and that I think I should cut that, as well. He said, yes that it happens a lot to Celiac patients and that I'd be able to introduce dairy back into my diet later. I said, "Oh yeah, because the enzymes are at the end of the villi," to which he laughed and replied, "Well you don't need me at all now! You know everything!" :lol:

Question - Did anyone else have a hard time eating again after the biopsy? I ate a banana and a little more food later on, but it feels like someone is punching me in the stomach. Is that from the anesthesia? I'm also used to eating about every three hours. Maybe it's from not eating for so long and finally putting food into an empty stomach?

Jaymie Jaymz Rookie
Jaymie Jaymz
Posted

Question - Did anyone else have a hard time eating again after the biopsy? I ate a banana and a little more food later on, but it feels like someone is punching me in the stomach. Is that from the anesthesia? I'm also used to eating about every three hours. Maybe it's from not eating for so long and finally putting food into an empty stomach?

I picked up Jack in the Box on the way home from my biopsy and I barely got through a few bites before my stomach started cramping up. It's been two days since I've had it done and my stomach still hurts just a little after I eat.

I'm not sure what it's from, but it might be normal. I did have a stomach biopsy taken, too, so it was pretty dumb to try to eat something so heavy and greasy afterwards. ;)

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. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      @rei.b, I understand how frustrating starting a new way of eating can be. I tried all sorts of gluten-free processed foods and just kept feeling worse. My health didn't improve until I started the low histamine AIP diet. It makes a big difference. Gluten fits into opioid receptors in our bodies. So, removing gluten can cause withdrawal symptoms...
    2. captaincrab55
      - captaincrab55 replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Finding gluten free ingredients

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal. My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet. I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free...
    3. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and...
    4. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long? DGP IgG antibodies are produced in response to a partial gluten molecule. This is different than what tissue transglutaminase antibodies are produced in response to. TTg IgA antibodies are produced in the intestines in response to...
    5. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,132
    • Most Online (within 30 mins)
      7,748
    Exhausted-momma
    Newest Member
    Exhausted-momma
    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

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • 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.