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

Endoscopy Looked Good

svroche

Recommended Posts

svroche Rookie
svroche
Posted

My 4-yr-old son had an endoscopy this morning, and the doctor said that everything looks great. He took (I think) 8 biopsies, and now we are awaiting the results to discuss at our follow-up on October 21st. He also ordered a full IgA serum level because the only reason we had the procedure in the 1st place was due to a positive gliadin IgG test, with a negative on the TtG and gliadin IgA. The doctor does not really suspect Celiac at this point because the duodenum looked so good.

I am still very concerned about my son's drop on the growth charts, his belly pains, and his numerous trips to the bathroom with loose stool. If it's not Celiac, not sure what to do next.

I was wondering if any parents of children with Celiac have had similar test results?

Thanks,

Sarah

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

Celiac.com Sponsor (A8-M):


GlutenFreeManna Rising Star
GlutenFreeManna
Posted

My 4-yr-old son had an endoscopy this morning, and the doctor said that everything looks great. He took (I think) 8 biopsies, and now we are awaiting the results to discuss at our follow-up on October 21st. He also ordered a full IgA serum level because the only reason we had the procedure in the 1st place was due to a positive gliadin IgG test, with a negative on the TtG and gliadin IgA. The doctor does not really suspect Celiac at this point because the duodenum looked so good.

I am still very concerned about my son's drop on the growth charts, his belly pains, and his numerous trips to the bathroom with loose stool. If it's not Celiac, not sure what to do next.

I was wondering if any parents of children with Celiac have had similar test results?

Thanks,

Sarah

I don't know why dr's like to say this when they haven't even gotten the results back yet but it seems to be a trend now for them to jump to conclusions before they get the report. Wait until you get he report before you draw any conclusions. Villi damage usually cannot be seen except under a microscope. That is why it can also be false negative in children or people without a lot of damage yet--the dr can't see damage with their eyes when biopying--they are only guessing about where to take samples. So if the the damage is patchy they can easily miss it. With the positive blood test you should put him on a gluten-free diet regardless of the results of the biopsies. You can start him on the gluten-free diet now since his tests are all done, you don't need to wait for the results to start the diet.

carecare Enthusiast
carecare
Posted

So I wonder this...do dr's believe a patient to be gluten intolerant if their biopsies are negative yet have a positive IgG test? I'm curious. My son was positive on his deamidated IgG test...and his endoscopy is in December. However, no matter what the test reveals in december a gluten free diet will be resumed 100% because I know he has an issue with gluten. Do dr's not believe that a positive blood test is at the very least gluten intolerant? If blood work is positive why is it positive?...I am going to ask the GI this on friday. My daughter had a positive gliadin IgA result back 7-8 yrs ago and I was never told about it...yet she is clearly reacting to gluten as are my two boys. Her recent blood test was negative yet I know she suffers when eating gluten. I'm just curious as to why a doctor wouldn't at least admit the body is reacting to gluten when a blood test shows it is...even if the biopsy or TTG isn't positive.

Sorry, I have questions too! :blink: Didn't mean to hijack your post...but it sort of goes along with what you are wondering too. I mean...if your son has positive results when a gluten free diet is implemented then you would know for yourself that he's at the very least gluten intolerant.

svroche Rookie
svroche
Posted
  • Author

So I wonder this...do dr's believe a patient to be gluten intolerant if their biopsies are negative yet have a positive IgG test? I'm curious. My son was positive on his deamidated IgG test...and his endoscopy is in December. However, no matter what the test reveals in december a gluten free diet will be resumed 100% because I know he has an issue with gluten. Do dr's not believe that a positive blood test is at the very least gluten intolerant? If blood work is positive why is it positive?...I am going to ask the GI this on friday. My daughter had a positive gliadin IgA result back 7-8 yrs ago and I was never told about it...yet she is clearly reacting to gluten as are my two boys. Her recent blood test was negative yet I know she suffers when eating gluten. I'm just curious as to why a doctor wouldn't at least admit the body is reacting to gluten when a blood test shows it is...even if the biopsy or TTG isn't positive.

Sorry, I have questions too! :blink: Didn't mean to hijack your post...but it sort of goes along with what you are wondering too. I mean...if your son has positive results when a gluten free diet is implemented then you would know for yourself that he's at the very least gluten intolerant.

You voiced the same question I have been wondering! Please let me know on this thread what your doctor says to that question on Friday. It stands to reason that a positive gliadin antibody test shows some sort of reaction to gluten, right? Needless to say, our doctor is not done with us yet; we meet with him to go over everything on the 21st, and he has also already referred us to a pediatric nutritionist. He also asked me to pay closer attention to my son's diarrhea/loose stool, as to exactly how many times a day it is happening. (His current theory after the endo is that my son is not completely eliminating each time he goes, causing him to go frequently.)

I look forward to hearing your doctor's answer about the positive test.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

So I wonder this...do dr's believe a patient to be gluten intolerant if their biopsies are negative yet have a positive IgG test? I'm curious. My son was positive on his deamidated IgG test...and his endoscopy is in December. However, no matter what the test reveals in december a gluten free diet will be resumed 100% because I know he has an issue with gluten. Do dr's not believe that a positive blood test is at the very least gluten intolerant? If blood work is positive why is it positive?...I am going to ask the GI this on friday. My daughter had a positive gliadin IgA result back 7-8 yrs ago and I was never told about it...yet she is clearly reacting to gluten as are my two boys. Her recent blood test was negative yet I know she suffers when eating gluten. I'm just curious as to why a doctor wouldn't at least admit the body is reacting to gluten when a blood test shows it is...even if the biopsy or TTG isn't positive.

Sorry, I have questions too! :blink: Didn't mean to hijack your post...but it sort of goes along with what you are wondering too. I mean...if your son has positive results when a gluten free diet is implemented then you would know for yourself that he's at the very least gluten intolerant.

IMO, many dr's (if they know anything about celaic testign to begin with) are following the old standard of a positive biopsy being the most important element for diagnosis. From what I understand, the blood tests have come a LONG way since then; when they are positive it's something like 95-99% accurate. There was a post on here recently about Dr Fasano (sp?) who had originally pioneered the idea that the biopsy is the gold standard for diagnosing-- he is now trying to get that practise changed so that if you meet other criteria (I think it was 4 out of 5) including positive bloodwork, positive for the most common genes and positve response to the diet you can be diagnosed celiac. Most drs are still of the former mindset however that celiac is rare and will only diagnose if you have positive biopsy.

Roda Rising Star
Roda
Posted

I would at the very least consider him gluten intolerent and put him gluten free since all his testing is completed. My oldest boy has been negative on everything for the past three years and even had a negative biopsy in Aug. I've finaly come to the realization that tests don't always answer everything for us. He has been gluten free since the end of August and I have seen small improvements in him. I will be doing a gluten challenge in mid Dec. to see what happens. I don't need to do a three month challenge since we are already done with biopsy. He has a follow up appt. with the GI in Jan. so I can discuss his progress and response to the gluten challenge. I suspect that we will be able to get a diagnosis of gluten intolerence so I can set up the necessary things for school. Currently since we are doing a trial on our own, we have not requested any special accomidations at school. He is going on 11 so, it hasn't been a problem yet. His teacher has been great when I explained everything.

divamomma Enthusiast
divamomma
Posted

My daughter's scope looked normal but the biopsy proved she had marsh classification 3D damage. Complete villous atrophy. How this was not seen on scope I don't know.

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

Celiac.com Sponsor (A8-M):


svroche Rookie
svroche
Posted
  • Author

My daughter's scope looked normal but the biopsy proved she had marsh classification 3D damage. Complete villous atrophy. How this was not seen on scope I don't know.

divamomma-

I see that your daughter was diagnosed at age 4, the same age as my son. What were her symptoms that prompted the testing?

My son was classified "failure to thrive" at a well-child check up, so our pediatrician ordered basic bloodwork to rule out the most common causes. Only his gliadin IgG came back positive (level 43, with reference 17), but his IgA TTG and Gliadin IgA were both negative. I'm very curious to get the results and find out if the positive IgG means anything, even if it is not Celiac.

divamomma Enthusiast
divamomma
Posted

My daughter was moody, irritable, lethargic, dark under eye circles, waking up crying at night, constantly hungry, achy legs. We also did blood work to see what (if anything) was going on. Her IgA ttg was 42.

svroche Rookie
svroche
Posted
  • Author

My daughter was moody, irritable, lethargic, dark under eye circles, waking up crying at night, constantly hungry, achy legs. We also did blood work to see what (if anything) was going on. Her IgA ttg was 42.

Thanks for sharing. You did not mention diarrhea, so was that not a problem for her? Except for the always hungry part, my son has the same symptoms, but since there is no chronic diarrhea or visible damage in the small intestine he is not really suspecting Celiac. Two of my other children also exhibit the same symptoms, so now I am really starting to wonder if their smallness has a cause. I know I'll have at least a partial answer by next Friday, but I really find myself addicted to reading everything I can about Celiac!

divamomma Enthusiast
divamomma
Posted

Oops, sorry! She never had diarrhea but was chronically constipated; for as far back as I can remember.

Archived

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

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


  • Member Statistics

    • Total Members
      132,140
    • Most Online (within 30 mins)
      7,748
    KP009
    Newest Member
    KP009
    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

    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan out in the long run. I'm not sure it's any one thing but may, instead, be a combination of things that coalesce at certain times. It's very frustrating. The medication (sumatriptan or "Imatrix") is effective and is the only thing that will quell the pain. NSAIDs, Tylenol, even hydrocodone doesn't touch it. But they only give you 9 does of sumatriptan a month. And it doesn't help that medical science doesn't really know what causes migraines. They know some things about it but the root cause is still a mystery.
    • Scott Adams
      Tamale ingredients

      By Scott Adams · Posted

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    • Wheatwacked
      GI DX celiac despite neg serology and no biopsy

      By Wheatwacked · Posted

      Just a gluten free diet is not enough.  Now you have to identify and replenish your malnutrition.  Celiac disease is co-morbid with malabsorption syndrome.  Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely.  It takes time to heal and you need to focus on vitamins and minerals.  Gluten free foods are not fortified like regular processed foods.  
    • Sarah Grace
      Headaches / Migraines and Hypoglycaemia

      By Sarah Grace · Posted

      Dear Kitty Since March I have been following your recommendations regarding vitamins to assist with various issues that I have been experiencing.  To recap, I am aged 68 and was late diagnosed with Celiac about 12 years ago.  I had been experiencing terrible early morning headaches which I had self diagnosed as hypoglycaemia.  I also mentioned that I had issues with insomnia, vertigo and brain fog.   It's now one year since I started on the Benfotiamine 600 mg/day.  I am still experiencing the hypoglycaemia and it's not really possible to say for sure whether the Benfotiamine is helpful.  In March this year, I added B-Complex Thiamine Hydrochloride and Magnesium L-Threonate on a daily basis, and I am now confident to report that the insomnia and vertigo and brain fog have all improved!!  So, very many thanks for your very helpful advice. I am now less confident that the early morning headaches are caused by hypoglycaemia, as even foods with a zero a GI rating (cheese, nuts, etc) can cause really server headaches, which sometimes require migraine medication in order to get rid off.  If you are able to suggest any other treatment I would definitely give it a try, as these headaches are a terrible burden.  Doctors in the UK have very limited knowledge concerning dietary issues, and I do not know how to get reliable advice from them. Best regards,
    • 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.
×
×
  • 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.