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

First Doctor Visit

Mindy Sue

Recommended Posts

Mindy Sue Newbie
Mindy Sue
Posted

Hello. My 13 year old daughter was diagnosed with Celiac from a blood test 2 weeks ago. We are going to see the pediatric gastro doctor this coming Monday. I am completely new to this and overwhelmed by all the info on the internet. What questions should I ask the doctor and what information should I get? Should she have further tests done? She has started the gluten free diet even though I have read she should wait until she sees the specialist but I was initially told we wouldn't get an appointment for 6 to 8 months. She also is in such pain so we went ahead and started the diet. She has somewhat improved already! Any suggestions are greatly appreciated.

Thanks,

Mindy

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

Celiac.com Sponsor (A8-M):


Skysmom03 Newbie
Skysmom03
Posted

First of all, blood test alone can't diagnose celiac disease. It could have been an unreliable test. To check for sure, she will have to have an endoscopy done to biopsy her small intestine. DO NOT start the gluten free diet yet. It can make the biopsy inaccurate. Your pediatric gastro will tell you this as well when you go in.

I have two people in my home who have celiac disease. My husband was diagnosed a year and a half ago and my 9 yr old son was diagnosed a month ago. My husband got really sick when they found it. He thought is symptoms were normal.... Until he lost 40 lbs. We checked my son because celiac disease is genetic and sure enough he had it to. My husband has apparently had it for years and my son has had it for about two or three according to the doctor.

It is a life changing event. But nothing to be frightened of ( unless you choose not to follow the diet) . It is all about reading labels. Google is our new best friend! My son Aja's handled it well, he has seen his dad follow the diet for sometime now so he is use to it. We order a lot of things without the bread and we find safe goodies that he can have. He takes a multivitamin everyday. Also beware of Claus, glues, stps, and envelopes as well as soaps and shampoos! If you have any questions feel free to ask. I am no expert but with to Celiacs in the house. I have to be well informed..... I am the minority after all!!! :)

Skysmom03 Newbie
Skysmom03
Posted

I wouldn't think it would take that long to get an appointment! This can be quite serious after all.

kareng Grand Master
kareng
Posted

There is no need to worry about stamps and envelopes. That is one of those internet myths that will not die. Most glues are fine, also. A 13yr old should be able to be careful with glue but all Elmers are gluten-free .

StephanieL Enthusiast
StephanieL
Posted

First of all, blood test alone can't diagnose celiac disease. It could have been an unreliable test. To check for sure, she will have to have an endoscopy done to biopsy her small intestine.

This isn't exactly true any more. They are looking now at 5 criteria for dx. and a biopsy may not be needed.

That said, I agree with not starting the gluten free diet until you see the GI, it's only a few days just to be sure they don't want to do the endoscopy.

Hang in there!

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

StephanieL

Please could you list or link to the 5 diagnostic criteria? My doctors only recognize blood test and biopsy and I need all the help I can get to convince them!

Mindy Sue

Good luck with a diagnosis for your daughter

my3monkees Rookie
my3monkees
Posted

The pediatrician diagnosed my daughter without the endoscopy. Technically I think her chart reads "probable Celiac". She improved so drastically when we did a food trial, the doctor was willing to work with that. The ped. GI was 2 hours away and my daughter didn't want to go back to eating the gluten for the challenge. The doctor even told me, what was the point, weather the test was preformed or not, she needed to be gluten free. The test wasn't going to change the outcome. The diet worked stick with it. If at some point in the future, my daughter wants to be tested, she could do the endoscopy then.

I agreed, I wasn't willing to put a child who had been sick and miserable for so long, through more misery, just to get an official test result! JMO

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

Celiac.com Sponsor (A8-M):


StephanieL Enthusiast
StephanieL
Posted

StephanieL

Please could you list or link to the 5 diagnostic criteria? My doctors only recognize blood test and biopsy and I need all the help I can get to convince them!

Hi MindySue,

Here is a link to the abstract of the publication (not sure where to find it without paying but I am sure it's available I just did a quick search as the kids are being crazy right now). The last line lists the criteria they are suggesting. Biopsy is listed but if you have the other 4, he (who is THE Celiac Dr. here in the US) says that's good enough!

Open Original Shared Link

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

Great, thanks.

GottaSki Mentor
GottaSki
Posted

Open Original Shared Link

Great link!

Thanks Stephanie :)

Archived

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

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


  • Member Statistics

    • Total Members
      131,945
    • Most Online (within 30 mins)
      7,748
    Miyasato
    Newest Member
    Miyasato
    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

    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
    • DebJ14
      Does anyone here also have Afib

      By DebJ14 · Posted

    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      @DebJ14, You said "husband has low platelets, bruises easily and gets bloody noses just from Fish Oil  He suggested he take Black Cumin Seed Oil for inflammation.  He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation."   I don't think black seed oil is lowering inflammation.  It's lowering blood glucose levels. Black cumin seed lowers blood glucose levels.  There's a connection between high blood glucose levels and Afib.    Has your husband been checked for diabetes?   Must Read: Associations of high-normal blood pressure and impaired fasting glucose with atrial fibrillation https://pubmed.ncbi.nlm.nih.gov/36750354/  
    • knitty kitty
      4.5 years into diagnosis, eating gluten-free and still struggling: would love support, tips, & stories

      By knitty kitty · Posted

      Healthy Omega Three fats.  Olive oil or flaxseed oil, oily fish, fatty cuts of meat.   Our bodies run much better on burning fats as fuel.  Diets based on carbohydrates require an increased amount of thiamine to process the carbs into fuel for the body.  Unfortunately, thiamine mononitrate is used to enrich rice.  Thiamine mononitrate is relatively unusable in the body.  So a high carb diet can further decrease thiamine stores in the body.  Insufficient thiamine in the body causes the body to burn body fat and muscle for fuel, so weight loss and muscle wasting occurs.  Those extra carbohydrates can lead to Candida (often confused with mold toxicity) and SIBO (Small Intestinal Bacterial Overgrowth).   Losing weight quickly is a symptom of thiamine insufficiency.  Muscle wasting is a symptom of thiamine insufficiency.  I lost sixty pounds in a month.   Having difficulty putting weight on and keeping it on is a symptom of thiamine insufficiency.   The AIP diet works because it eliminates all grains and grasses, rice, quinoa, all the carbs.  Without the carbs, the Candida and SIBO get starved and die off.  Easy way to change your microbiome is to change what you feed it.  With the rowdy neighbors gone, the intestine can heal and absorb more nutrients.   Supplementing with essential vitamins and minerals is beneficial.  Talk to your doctor and nutritionist.  Benfotiamine is a form of thiamine that promotes intestinal healing.  The eight B vitamins are water soluble, so if you don't need them, they can be gotten rid of easily.   Night shades are excluded on the AIP diet.  Potatoes, tomatoes, peppers and eggplant are not allowed on the AIP diet.  They contain alkaloids that promote "a leaky gut".  Benfotiamine can help here. Sweet potatoes are avoided because they contain thiaminases, chemicals that break thiamine so that the body cannot use it.   The AIP diet has helped me.
×
×
  • 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.