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

Biopsy and nerves


Donna73

Recommended Posts

Donna73 Apprentice

I was diagnosed via blood test with celiac back in October.  I originally made the decision not to have the biopsy. All my blood tests were positive, and were very high.  But, I have had ongoing pain and my GI wants to do the biopsy to get a baseline on damage. As he put it, he has never seen numbers as high as mine with a false positive.  He said that if my biopsy comes back negative, it simply means i have done really well on gluten free, but he is not expecting negative biopsy.  I was given the diagnosis without the biopsy.  And he is not asking me to do a gluten challenge, which is good news for me.

Im really freaked out about having the endoscopy.  He said Im not put out like surgery, and its more of a twilight.  Just the thought of it makes me thinking im suffocating.  I had surgery when I was 16 and it has caused a great deal of medical anxiety. What is the endoscopy really like?  I keep thinking I should cancel.  Its scheduled in  2 weeks.  2 weeks to think about it and cancel if I want to.


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

A colonoscopy is much worse in terms of prep.  I still can not drink lemon gaterade without shuddering!  ? I went in the morning.  I was talking to my doctor while I was being prepped  and all of a sudden I was in the recovery area!  It was that easy!  It is also good to have him check for other things like an ulcer or SIBO.  It might not just be celiac disease only.  Remember too that you are new to the diet and takes time to heal.  You might even consider a dietician's' help to figure out if you are accidentally ingesting gluten.  

On my other post to you, I told you about my glutening in July.  In August, I was in my GI's office asking for a follow-up antibodies test.  I had anemia at the time I was diagnosed and no tummy issues to speak of.   This time I had lots of intestinal pain.  My GI suspected SIBO or a blocked bile duct, but it was just celiac disease.  I just needed another month or two to heal.  

Enzymes (including lactose ones) helpd temporarily.  

Take care and try not to worry!  

 

LookingforAnswers15 Enthusiast

Hi Donna,

do not worry! When they did my colonoscopy it was just as you described like a twilight. It does not hurt, you do not really know what is really happening and once you are done you are just happy that you do not have to think about it any longer that you forget that you had this unusual experience. Do not cancel it!

cristiana Veteran

Hi Donna

I do understand your concern.  I had never had much in the way of surgical intervention and had never had a sedative and was seriously freaking out about it.  Would you believe it, in the UK it is quite routine to have an endoscopy without any sedation at all - my friend was dx'd this way - so I was thinking, I want that too!  I have an inbuilt distrust of sedation.

So I went round asking all and sundry what they would do if they were me and everyone told me to stop stressing and just have the sedation.  My gastroenterologist told me that it would be like getting drunk, great fun, without the hangover afterwards.  As I have never got drunk (alcohol gives me a headache instantly) that didn't really sell it to me.

When the awful day came I went into the hospital and my pulse rate was sky high.  Don't worry I was told, you have white coat tachycardia (i.e. terror of doctors - too true).   When they stuck this thing in my arm and gave me the sedation I was thinking it isn't making any difference.  I remember chatting to the medical staff who told me to relax, not to worry, they had been practising doing endoscopies all day and by now were pretty good at it. 

But in fact all I remember is it was over in a flash.   I was told afterwards I was talking throughout the procedure - I feel so sorry for the staff as it must have been total nonsense.

 I am very glad I had it as it proved beyond all doubt what was wrong with me, and showed that I did have very damaged villi.  I think perhaps that is why my recovery hasn't been that quick.

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. - Scott Adams replied to FannyRD's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Gluten free phosphate binders for dialysis patients

    2. - Scott Adams replied to Cecile's topic in Related Issues & Disorders
      2

      Symptoms

    3. - trents replied to Cecile's topic in Related Issues & Disorders
      2

      Symptoms

    4. - FannyRD posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Gluten free phosphate binders for dialysis patients

    5. - Cecile posted a topic in Related Issues & Disorders
      2

      Symptoms

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

    • Total Members
      133,180
    • Most Online (within 30 mins)
      7,748

    Eldret419
    Newest Member
    Eldret419
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Living with celiac disease can be especially hard when you’re in a smaller town and don’t have many people around who truly understand it, so you’re definitely not alone in feeling this way. Ongoing fatigue, joint pain, and headaches are unfortunately common in people with celiac disease, even years after diagnosis, and they aren’t always caused by gluten exposure alone. Many people find that issues like low iron, low vitamin D, thyroid problems, other autoimmune conditions, or lingering inflammation can contribute to that deep exhaustion, so it’s reasonable to push your doctor for more thorough blood work beyond just vitamin B. As for eggs, it’s also not unusual for people with celiac disease to develop additional food intolerances over time; tolerating eggs as an ingredient but not on their own can point to sensitivity to the proteins when they’re concentrated. Some people do better avoiding eggs for a while, then carefully testing them again later. Most importantly, trust your body—if something consistently makes you feel awful, it’s okay to avoid it even if it’s technically “allowed.” Many of us have had to advocate hard for ourselves medically, and connecting with other people with celiac disease, even online, can make a huge difference in feeling supported and less isolated.
    • trents
      Welcome to the celiac.com community, @Cecile! It is common for those with celiac disease to develop sensitivity/intolerance to non-gluten containing foods. There is a high incidence of this with particularly with regard to dairy products and oats but soy, eggs and corn are also fairy common offenders. Like you eggs give me problems depending on how they are cooked. I don't do well with them when fried or scrambled but they don't give me an issue when included in baked and cooked food dishes or when poached. I have done some research on this strange phenomenon and it seems that when eggs are cooked with water, there is a hydrolysis process that occurs which alters the egg protein such that it does not trigger the sensitivity/intolerance reaction. Same thing happens when eggs are included in baked goods or other cooked dishes since those recipes provide moisture.  So, let me encourage you to try poaching your eggs when you have them for breakfast. You can buy inexpensive egg poacher devices that make this easy in the microwave. For instance:  https://www.amazon.com/Poacher-Microwave-Nonstick-Specialty-Cookware/dp/B0D72VLFJR/ Crack the eggs into the cups of the poacher and then "spritz" some water on top of them after getting your fingers wet under the faucet. About 1/4 teaspoon on each side seems to work. Sprinkle some salt and pepper on top and then snap the poacher shut. I find that with a 1000 watt microwave, cooking for about 2 minutes or slightly more is about right. I give them about 130 seconds. Fatigue and joint pain are well-established health problems related to celiac disease.  Are you diligent to eat gluten-free? Have you been checked recently for vitamin and mineral deficiencies? Especially iron stores, B12 and D3. Have you had your thyroid enzyme levels checked? Are you taking any vitamin and mineral supplements? If not, you probably should be. Celiac disease is also a nutrient deficiency disease because it reduces the efficiency of nutrient absorption by the small bowel. We routinely recommend celiacs to supplement with a high potency B-complex vitamin, D3, Magnesium glycinate (the "glycinate" is important) and Zinc. Make sure all supplements are gluten-free. Finally, don't rule out other medical problems that may or may be associated with your celiac disease. We celiacs often focus on our celaic disease and assume it is the reason for all other ailments and it may not be. What about chronic fatigue syndrome for instance?
    • FannyRD
      I work as a renal RD and have a Celiac pt which has been rare for me (I might have had 3-4 Celiac pts in 15 years). I wondered if anyone can confirm that these medications are gluten free and safe for Celiac.  Ferric citrate (Auryxia)  Sucroferric oxyhydroxide (Velphoro)  lanthanum carbonate (Fosrenol) sevelamer carbonate (Renvela)   Thank you!
    • Cecile
      I have had celiac for over 5 years.  I am in a smaller town, and it is not a common thing.  Can you all help me with a few things?  I keep going to my Doctor because I am so tired.  I mean really tired.  I also have joint pain and headaches.  I was told this is from Celiac, but they say the tiredness may not be.  If so, does anything help you with this?  I am on Vitamin B shots, but they are not taking care of the problem.  Also, when I eat eggs, they tear me up.  This gives be intestinal issues badly.  Eggs in things, do not bother me as eating a boiled or fried egg.  I need some celiac friends and advice.  Thanks all!!
×
×
  • 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.