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

I Need Advice

Dyan

By Dyan
in Coping with Celiac Disease

Recommended Posts

Dyan Rookie
Dyan
Posted

My 11 year old daughter was diagnosed on Monday with Celiacs. She had been to her regular Dr. and he ended up telling me that she was depressed. Well, that didn't sit well with me after awhile. Sadly, I did believe him for 5 months and then one day for no reason, I said to myself "labs make mistakes" and then I started doing more research.

She had a lot of the symptoms of Celiacs so I took her to a different Dr. And this one thought she had an ulcer. Well I insisted she also run a blood test for Celiacs and she did. But she said it to me almost like "well, I know you are wrong but just to prove it, I'll order the test" Well her test for a bacteria that can cause ulcers was negative. But her blood tests for Celiac were positive. When I asked about the follow up biopsy she told me that nothing more was necessary.

Now I am very new to all of this, but in the book I am reading Celiac Disease: A hidden epidemic, this Dr. says a biopsy is the gold standard. She is responding well to being gluten free. My understanding is it will take a few months to get into the GI dr. I don't want to have to put her back on gluten for the biopsy, but I also don't want her to not know for sure what is wrong with her.

Her Dr. told me that these blood tests are very acurate. Is this the same type of info everyone else is dealing with? Do I make the appointment anyway and keep her gluten free or go back on the gluten?

I really appreciate any and all advice. Thank you.

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

Celiac.com Sponsor (A8-M):


Kaycee Collaborator
Kaycee
Posted

Hello Dyan,

I think your daughter is lucky she has a persistant and caring mother who wants answers.

Yes my doctor thought a blood test was good enough of a diagnosis for coeliac, he did order a biopsy but I had to wait on the public health system and it took a year to happen, and I had been gluten free for about a year at that stage. Needless to say the result for the biopsy was negative, but my blood test had been positive and the levels of antibodies are going down slowly over time. It would be nice to have that extra test to agree with the blood test. But I will stay on a gluten free diet, as I can remember how sick I was before and how sick I get with a touch of gluten.

It makes it tough, as performing a biopsy later will probably come back negative. But then even having a biopsy now there is no guarantee it will match the blood test results as you can have positive blood test and negative biopsy done at the same time.

Cathy

AndreaB Contributor
AndreaB
Posted

If the blood test is positive, it's positive. There are false negatives though.

If you feel you need the biopsy then you need to keep her on gluten. With her being young she'd probably heal quickly and biopsies are hit and miss as it is. There are doctors out there who will look and the blood test results along with the positive dietary response and say nothing more is needed.

If she suffers from depression while on gluten it may be best to keep her off of it and skip the biopsy. She does have the positive results and the dietary change. Hopefully that will be all that she needs to stay on the diet for life.

Darn210 Enthusiast
Darn210
Posted

I think it depends on the doc . . . my kid's doc would take the positive blood test and positive results from the diet. I think some people (who may be in denial) need the positive biopsy to convince themselves to stay on the diet. Also, some may need an official diagnosis when dealing with the school system. However, it sounds like you could get that from the doc that did the blood test.

Good for you for following your instincts!! And welcome to the board! :)

FootballFanatic Contributor
FootballFanatic
Posted

If I was in your position, I would give the gluten-free diet a shot, and see if it works (knowing it can take quite a while to heal, but there should be a difference within a week or so; for example, I am not better yet after 4 months but I can tell that eliminating gluten made a difference)

Also if you are going to start with the gluten free diet, learn all the rules. I found out a few months into this that my meds had gluten in them, because I trusted my pharmacist and didn't call the manufacturer.

Best of luck.

buffettbride Enthusiast
buffettbride
Posted

You can consider it a positive diagnosis with the blood tests so your doctor is not entirely wrong. However, there are reasons why the biopsy could be helpful as well--such as to assess the damage, etc. Plus, it is nice to have that "gold standard" diagnosis. I'm definitely happy we did it for my daughter, but it definitely isn't something that is for everyone.

Of course, there are risks associated with an endoscopy for kids as well as adults. My daughter was 9 when she had her endoscopy (she had hers before the blood tests, actually) and she had absolutely no problems with it at all.

I would suggest going to a pediatric GI specialist such as at a Children's Hospital in your area, if possible.

As a side note, my daughter is very proud of the pictures she has of her duodenum and tummy from the endoscopy, they are actually hanging in her classroom at school. ;)

Dyan Rookie
Dyan
Posted
  • Author

Thank you everyone for your words of support. She has been gluten free since Tuesday. Before that she has had a stomach ache all day everyday for 6 months. She would say that the pain was between an 8 and 10 all the time. Now with just a few days of no gluten her pain is a level 5. I can tell her energy has improved (along with her mood swings).

I cannot get her into the GI until the end of Jan. So I think I am going to just skip the biopsy.

Thank you, I know I will be reading a lot of old posts over the next few days. This forum is wonderful.

Dyan

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

Celiac.com Sponsor (A8-M):


JNBunnie1 Community Regular
JNBunnie1
Posted
Thank you everyone for your words of support. She has been gluten free since Tuesday. Before that she has had a stomach ache all day everyday for 6 months. She would say that the pain was between an 8 and 10 all the time. Now with just a few days of no gluten her pain is a level 5. I can tell her energy has improved (along with her mood swings).

I cannot get her into the GI until the end of Jan. So I think I am going to just skip the biopsy.

Thank you, I know I will be reading a lot of old posts over the next few days. This forum is wonderful.

Dyan

I think if I were in your position I'd skip the biopsy too. The thing is that there is no false positive blood test, if it says you have it then you have it. The biopsy is considered the 'gold standard' and I'm not sure why, as there is no risk of false positive through blood testing. Personally, I think it's just a way for hospitals to make more money, but I'm cynical about that sort of thing. There's no reason to doubt her blood tests, though.

kbtoyssni Contributor
kbtoyssni
Posted

I don't see any reason for a biopsy, either. You've got a positive blood test plus dietary response. Biospies aren't 100% accurate, either, so you'd also have to weigh what you'd do if you got a negative biopsy - would you keep her gluten-free? If you do want to get a scope she has to be on gluten which it sounds like you'd be reluctant to do.

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. TheDHhurts
      - TheDHhurts posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Prana Organics no longer GFCO-certified

      I've been buying my seeds and nuts from Prana Organics for a number of years because the products have been GFCO-certified. I just got a new order delivered of their flax and sunflower seeds, and it turns out that they are no longer GFCO-certified. Instead, it just has a generic "Gluten Free" symbol on the package. I reached out to them to ask what...
    2. cristiana
      - cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK. Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs. If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend...
    3. trents
      - trents replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods". Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy...
    4. Dizzyma
      - Dizzyma posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her on a full gluten free diet. my concerns are that she wasn’t actually physically s...
    5. Scott Adams
      0

      Better-Than-Takeout Gluten-Free Chicken Fried Rice

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,925
    • Most Online (within 30 mins)
      7,748
    Jimlock
    Newest Member
    Jimlock
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • TheDHhurts
      Prana Organics no longer GFCO-certified

      By TheDHhurts · Posted

      I've been buying my seeds and nuts from Prana Organics for a number of years because the products have been GFCO-certified. I just got a new order delivered of their flax and sunflower seeds, and it turns out that they are no longer GFCO-certified. Instead, it just has a generic "Gluten Free" symbol on the package. I reached out to them to ask what protocols/standards/testing they have in place. The person that wrote back said that they are now certifying their gluten free status in-house, but that she couldn't answer my questions related to standards because the person with that info was on vacation. Not very impressed, especially since it still says on their website that they are GFCO-certified. Buyer beware!
    • cristiana
      Newly diagnosed mam to coeliac 11 year old

      By cristiana · Posted

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Newly diagnosed mam to coeliac 11 year old

      By trents · Posted

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
×
×
  • 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.