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

Testing/ Son Is Going In For Biopsy & Blood Testing

skurtz

Recommended Posts

skurtz Explorer
skurtz
Posted

Never thought to ask Dr but when they do blood testing do they check for allergies to foods, or is it strictly for celiac? Also I was kind of suprised to learn , when they do the biopsy its down the throat? I thought they did by a colonoscopy. any info would be great!!!!!!!!

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

Celiac.com Sponsor (A8-M):


Guest nini
Guest nini
Posted

regarding your first question, celiac testing and allergy testing are two entirely different things. make sure they are doing a complete Celiac Panel of tests

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

when they do the biopsy make sure they take at least 6 to 8 samples. If they do not they are more likely to miss any damage.

Rachel--24 Collaborator
Rachel--24
Posted

They do an endoscopy to diagnose Celiac...so yes, its the one thats down the throat.

skurtz Explorer
skurtz
Posted
  • Author

rachel maybe you know the answer to this: so if a colonoscopy is performed can they find out that way also?

Guest nini
Guest nini
Posted
rachel maybe you know the answer to this: so if a colonoscopy is performed can they find out that way also?

not from a colonoscopy as far as I know...

the Dr. that spoke at our Celiac Support group meeting this past weekend said that the damage starts in the Upper part of the intestines which is why the endoscopy down the throat.

skurtz Explorer
skurtz
Posted
  • Author

RACHEL:thank you very much for the quick response. My son is 11 & has aspergers ( high functioning autism)

He's been having stomaches since sep we thought it was anexity from school. we did the gluten free det for the 1st 2 weeks of jan. we both felt GREAT!!!!!! & then he got amothing by accident & he broke out with tiny blisters on his face, and stomach pains & d. I told the ped gastro today even if he comes back neg hes going right back on it It made a HUGE difference in mood everything rash gone.... I also went off diet and I feel like crap!!!! wainting to see the outcome with son before i go. So I have till the 20th fill him up with gluten little hard because now he doesnt want anything cause he knows he will feel like crap & the rash is down right ugly its on his face. thanks again

Guest nini
Guest nini
Posted

sorry, I kinda jumped in on Rachel, (I'm not Rachel btw :P )

because he's already been gluten-free the likelyhood that damage will be mostly healed and you will have a false negative. also because of the autism and aspergers, he should be gluten free anyway. so knowing that, I wouldn't bother going through with any further testing. Just go ahead and get him healthy by keeping him gluten free. Just my personal opinion.

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

Celiac.com Sponsor (A8-M):


skurtz Explorer
skurtz
Posted
  • Author

thanks for the input I think we are still going to go ahead he was only gluten free for 2 weeks the 1st 2 in jan

hes been eating whatever since. I do appreciate the info. Do you happen to know anything about dermititis herpetiformis? Is it caused by an allergy?

Rachel--24 Collaborator
Rachel--24
Posted
sorry, I kinda jumped in on Rachel, (I'm not Rachel btw :P )

LOL....No, you're *not* Rachel....you're Cornholio!! :lol::lol:

Stop stealing my answers Cornholio! :P

thanks for the input I think we are still going to go ahead he was only gluten free for 2 weeks the 1st 2 in jan

hes been eating whatever since. I do appreciate the info. Do you happen to know anything about dermititis herpetiformis? Is it caused by an allergy?

DH is a skin condition associated ONLY with Celiac Disease. If your son has DH then he would most definately need to remain gluten-free 100% as its the only cure for DH.

Guest nini
Guest nini
Posted
LOL....No, you're *not* Rachel....you're Cornholio!! :lol::lol:

Stop stealing my answers Cornholio! :P

oh ok... I'm sorry! pffffffft!!!! :P:P:P:P:P:P:P

skurtz Explorer
skurtz
Posted
  • Author
They do an endoscopy to diagnose Celiac...so yes, its the one thats down the throat.

rachel you said if I had any questions you could probably help me.The test my son is going to have are:

blood- BCB DIFF ESR AMYLASE LIPASE CMP TSH ATT

ALSO AN EGD

IS HE GOING TO GET EVERYTHING HE NEEDS???

SKURTZ/ (STEPHANIE)

THANK YOU SO VERY MUCH

happygirl Collaborator
happygirl
Posted

I'm not sure what all those letters mean! :P

I personally would call your dr/nurse and ask what tests they are running (in layman's terms). Tell her you specifically want to make sure the FULL Celiac panel is run. I would even tell her specifically what you want (the tests that nisla listed for you). Unfortunately, dr's don't always fully "get" Celiac....it is best to be as pro-active as you can! You should also tell her that you are requesting mulitple biopsy sites---many dr's do not practice that.

Good luck!

Guest nini
Guest nini
Posted
rachel you said if I had any questions you could probably help me.The test my son is going to have are:

blood- BCB DIFF ESR AMYLASE LIPASE CMP TSH ATT

ALSO AN EGD

IS HE GOING TO GET EVERYTHING HE NEEDS???

SKURTZ/ (STEPHANIE)

THANK YOU SO VERY MUCH

again, not Rachel here, BUT... these tests AS FAR AS I'M AWARE have NOTHING to do with Celiac. So either they are looking for something else with these tests, OR the Dr. has NO IDEA about Celiac. Please request that they do the tests that I posted earlier in this thread... Very important.

Rachel--24 Collaborator
Rachel--24
Posted

As Nini already stated.....those tests have nothing to do with Celiac. The TSH is a thyroid test and the others are for various other things but nothing related to Celiac.

The Celiac bloodtests were already posted by Nini in the second post of this thread....those are the tests the doctor needs to order. If your son is having an endoscopy/biopsy looking for Celiac then the GI needs to take several samples (not just a couple) from the intestines. Usually bloodtests are done first and then the biopsy if necessary.

jerseyangel Proficient
jerseyangel
Posted

An EGD is an endoscopy with a biopsy. So that test would be for Celiac.

Guest nini
Guest nini
Posted
An EGD is an endoscopy with a biopsy. So that test would be for Celiac.

I meant that those blood tests have nothing to do with Celiac. The specific Celiac panel is already listed at the top of this thread.

When he has the endoscopy, they Celiac Specialist Dr. that spoke at our Support Group Meeting on Sat. said that they will need to do AT LEAST six to eight samples for biopsy. Because he's already been "low gluten" be prepared that there may not be much if any damage... but as I said before, with autism and aspergers, he would need to be gluten free regardless of if he tests positive for Celiac or not.

skurtz Explorer
skurtz
Posted
  • Author

Thank you everyone for the quick response, The Dr. came highly recommended He's one of the best gastro peds out there, he's out of Pittsburgh PA. I am going to call his office on Mon. One of the mothers that recommended him, told me thats how he handles it when looking for celiac if he suspects that is the cause.

Bloodwork & EDG.Thats what he did for her son. I talked to the nurse at my Drs she said it all sounded like standard blood work except for the ATT & the RES? Anyway just to make sure I ll double check on monday.

She also told me that if the intestines are inflamed or irritated & its not celiac it could be irritated by a parasite or a food allergy. Very interesting. Thanks again. Oh ya 1 more thing if you have a wheat allergy

& you dont take care of it canit somewhere down the road turn into celiac?

skurtz (stephanie)

skurtz Explorer
skurtz
Posted
  • Author

According to the nurse at my drs (she just emailed me) The current GOLD standard for diag suspected celiac in children is performing a EGD, because children are more likely to give a false negatvie blood test beacause their bodies have not had suffcient time to amke the antibodies being tested. & the blood test that are be performed are to make sure nothing elses is going on.

Guest nini
Guest nini
Posted
According to the nurse at my drs (she just emailed me) The current GOLD standard for diag suspected celiac in children is performing a EGD, because children are more likely to give a false negatvie blood test beacause their bodies have not had suffcient time to amke the antibodies being tested. & the blood test that are be performed are to make sure nothing elses is going on.

Just FYI The current thinking by the "experts" is that within 6 months or so the biopsy will NO LONGER be accepted as the gold standard. The specific blood panel that has been mentioned all over this sight is becoming accepted as more accurate, especially since more labs are becoming familiar with how to read it.

Children are also less likely to have damage in the intestines show up too because they are young enough that in some cases the body is reacting but damage hasn't occured on a measurable level yet.

skurtz Explorer
skurtz
Posted
  • Author

To the last person I appreciate the info or I wouldnt be writing in. But unless your a Pedatric Gastro Dr. or a Specialist I think Im going with a professional on this subject.

Rachel--24 Collaborator
Rachel--24
Posted
To the last person I appreciate the info or I wouldnt be writing in. But unless your a Pedatric Gastro Dr. or a Specialist I think Im going with a professional on this subject.

I think many of use here have learned the hard way that the "specialists" really don't know all that they should regarding Celiac. Of course you should do what you feel feel best for your child but my advice is to do your own research and be aware that your son could have a negative biopsy and still have Celiac. Also as far as the bloodwork....those tests are unrelated to Celiac. You should look them up and then look up what the appropriate tests are for diagnosing Celiac. You will find that they are not the same. If these are the only bloodtests the doctor is running then I would be very concerned about his knowledge of Celiac.

Good luck to you. :)

Also, it is true what Nini wrote regarding the biopsy. Celiac specialists are coming to realize that the biopsy is a bit outdated and will no longer be considered the "gold standard" due to more accurate ways of testing. Biopsies often give false negatives so they basically can only rule Celiac in but can never completely rule it out.

Guest nini
Guest nini
Posted
To the last person I appreciate the info or I wouldnt be writing in. But unless your a Pedatric Gastro Dr. or a Specialist I think Im going with a professional on this subject.

I'm done here, you obviously don't want my help, you've pretty much ignored all my posts and now this.

ianm Apprentice
ianm
Posted

Skurtz you are going to find that the majority of doctors out there know little or nothing at all about celiac. I went to dozens of doctors and not one of them ever mentioned celiac or even entertained the thought of a dietary problem. All those so called professionals wanted to do was write me a prescription or twenty. You will find that the majority of people here are far more knowledgable than most doctors are.

skurtz Explorer
skurtz
Posted
  • Author

ALOT of you people are very negative !!!!!!!!!!!!!!!!!!

There are some DRS & some Specialist That are very good at what they do & very knowledgeable, they maybe far & few between But there are some really good ones!!!!!!!!!!! Maybe you just havent taken the time to be more persistant, it sounds like nini you would just rather be scarcastic & be right. Sorry my children are very important to me & I dont settle for mediocure. & if I did my son would have been labled ADD & he would have been placed on ritalin. So I think I m gonna have to go with the Specialist From Pittsburgh PA.

Rachel--24 Collaborator
Rachel--24
Posted

I'm sorry but it seems to me that you are *asking* us for opinions and advice and then when its offered to you...you want to either disprove it or insult the person who offered the advice. I for one, will no longer respond to your questions. You spefically asked if the tests the doctor is ordering are sufficient for your son. I, and the other posters all have responded that "No....these bloodtests are not correct if you're looking for Celiac. If you are not happy with the responses then I would suggest not asking for advice.

Frankly, I'm not sure what it is that you're looking for here.

It is a well known fact that the biopsy misses lots of Celiacs due to false negatives. Just ask how many people here have Celiac Disease but had negative biopsy. The best advice I can give you is to learn all you can but if you're only here to "attack" those responding to your questions that is not the purpose of this message board.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,546
    • Most Online (within 30 mins)
      7,748
    KimberlyAnne76
    Newest Member
    KimberlyAnne76
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Protein or fat?

      By Jsingh · Posted

      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      High Cost of Gluten-Free Foods

      By Chanda Richard · Posted

      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • 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.