Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Or Not?


BrandySimms

Recommended Posts

BrandySimms Newbie

Hi :)

I'm new and am not even sure whether or not my daughter has a gluten intolerance, but all signs point that way...so here I am.

My 13 month old has been having digestive issues (constipation) for about 6 months, pretty much right after she started table foods. The only thing that gets things moving is miralax. Her pediatrician (Dr. K) referred us to a gastroenterologist (Dr. A), who sent us for blood work (fun!). The results show (I haven't personally seen them, we've spoke over the phone) that the allergy panel is relatively normal, with very, very mild allergies to gluten and milk. However, she is IgA deficient, so I know that can show false negatives.

Dr.A wants to do an upper endoscopy to test for celiac, because he thinks that there is a good chance of her having it. We are not comfortable with this for our 13 month old. I suggested that we try a 100% gluten free diet and see if it makes a difference. I'm already eating a 70/30 gluten free diet as it is, for my own digestive concerns. I'm well aware of the commitment that it takes for a gluten-free diet and am willing to do that to help my baby. He told me not to go gluten-free if we are not doing the endoscopy. Also, if/when we decide to do the endoscopy we will have to reintroduce gluten to get accurate results, so we should just do it now. I understand his reasoning, but I don't agree with it.

Has anyone dealt with something similar? What was the ultimate outcome? Did a diet change alone prove that your child has a gluten intolerance?


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

If you were talking about an adult then I likely would say just go gluten free. However your child will need to be safe in school or daycare and in most instances a diagnosis is needed to accomplish that. If either your ped or your GI doctor is willing to give a diagnosis based on her improvement on the diet then IMHO you could skip the endoscopy. If not then it is better to do it now while your child is still eating gluten. Many have nasty reactions to a gluten challenge after they have been gluten free for a while so a challenge may be difficult later on. While any procedure has risks most endos go smoothly and only require a short time under anesthesia. 

africanqueen99 Contributor

I think the difference is if your doctor will give a clear diagnosis.  If you can get it written that your daughter has celiac then that's all you need for school - with or without an endoscopy.  If the doctor won't DX without scoping first then I'd go with that.

 

FWIW, I have three kids.  The youngest (18 months at the time) had the highest bloodwork and since she was so young we got a DX based on blood.  My older two had that weird mid-range bloodwork so they both had biopsies - one was DX, one wasn't, even though they both had negative biopsies.

 

I have a 504 plan for both my DX girls.  One in elementary and the other in our Early Childhood Center (both in our public school district).  I wouldn't have been given the gravity of accommodations without clear diagnoses for them.  Based on my situation, I wouldn't stop until you're sure of what's going on with her.

 

And, please, don't stop gluten until you're sure you're finished all her testing.  I know it's hurting her body, but getting to the bottom of this will help in the long run.

StephanieL Enthusiast

And, please, don't stop gluten until you're sure you're finished all her testing.  I know it's hurting her body, but getting to the bottom of this will help in the long run.

 

 

THIS!!!  

 

Please keep her on gluten until you 100% figure out what you are going to do (scope or not).  We are in an area now where there are questions by some Dr's (while others there is no question- go figure!) and I would not wish it on anyone!  I completely understand not wanting to do the scope and if you are that much against it or prefer more information perhaps getting the genetic test (which is NOT diagnostic in any way- PLEASE understand that!  Just says there is the genetic potential for Celiac) perhaps if that is + you may be more willing to do the scope.

RMJ Mentor

Can you get a copy of the results? You wrote "allergy panel", but celiac is not an allergy. If the full celiac panel, including IgA and IgG antibodies, has not been run, that would be a less invasive next step than an endoscopy for your little one.

BrandySimms Newbie

Can you get a copy of the results? You wrote "allergy panel", but celiac is not an allergy. If the full celiac panel, including IgA and IgG antibodies, has not been run, that would be a less invasive next step than an endoscopy for your little one.

These are the IgA and IgG tears they ran. What exactly does this show? High probability of celiac or not?

Antigliadin Abs, IgA. 1

Antigliadin Abs, IgG. 2

t-Transglutaminase (tTG) IgA <2

t-Transglutaminase (tTG) IgG <2

Immunoglobulin A, Qn, Serum 5

RMJ Mentor

Can you get the report that includes her results and the normal ranges? Those numbers look low, but normal ranges differ from lab to lab so it's hard to evaluate without them.


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



Celiac.com Sponsor (A8-M):



BrandySimms Newbie

Antigliadin Abs, IgA 1 (0-19)

Antigliadin Abs, IgG 2 (0-19)

tTG IgA < 2 (0-3)

tTG IgG < 2 (0-5)

Immunoglobulin A, Qn, Serum 5 (20-101)

psawyer Proficient

AImmunoglobulin A, Qn, Serum 5 (20-101)

RED FLAG! The total serum iGa is way below normal. The other tests may be false negatives due to this. She is not producing antibodies in the normal range overall, so the "low" gliadin numbers may not be meaningful. This could be age-related. Blood testing in very young children is notoriously unreliable.

As RavenWoodGlass said, having a confirmed diagnosis will be very important in enforcing her ADA 504 rights at day care, school, and in similar situations. I would do the endo if it was my child.

BrandySimms Newbie

Yes, that is what the dr is concerned about mainly. He sees low IgA levels a lot, but was more concerned because hers is VERY LOW. I'm still not sure what we are going to do. I'm on the fence and can understand the benefits of getting it done, but I'm also scared. My husband is 100% against it, though, and it's difficult to sway his decision. I think we will stick to a gluten diet (as much as it kills me to see her in pain) until we both can agree on something.

Thank you all for your input.

StephanieL Enthusiast

I can understand having different thoughts on the procedure.  Perhaps asking DH why he's so against it when it may be the ONLY way to tell if there is an issue because of the IgA issues may help you get to the heart of it and help work through it (if you are thinking you want to do it).  My DH HATES hospitals.  Really hates them. Not fond of Dr's either.  Most times when it is a major decision we have to make walking away for a day or two then coming back together with thoughts and questions he has has been helpful for us.  

 

It's important to remember- This isn't a "diet" that you can go off of.  This is a LIFE LONG requirement.  Would he rather her not have the information to make that life long decision?  Seems easy enough now but what about high school, college and beyond.  Do you want to say "oh we thought we were right" or would you prefer to have "proof" to show her?  Just some things to think about.

 

Is a procedure for a kid fun for a parent? Nope.  Not even a little.  Does it help us make the best decisions we can for our kids at this point in time? It can.

BlessedMommy Rising Star

Also, this diet is not easy to enforce when your child is in the care of others, such as grandparents or other caregivers. Having the gravity of a celiac diagnosis can really help, when it comes to taking all necessary precautions to keep your child healthy.

beth01 Enthusiast

Luckily I was diagnosed through a scope and blood work so when my daughter came up positive on her blood work, she didn't have to have the endoscopy. If the doctor would have suggested it, I would have. It is invasive and there are risks, though they are very small, but it really is a necessity in your situation. If it was my child I wouldn't hesitate. Children are young and resilient and she won't even remember the whole situation. I wish you luck in what ever you decide and your daughter gets back to feeling well.

GottaSki Mentor

Yes, that is what the dr is concerned about mainly. He sees low IgA levels a lot, but was more concerned because hers is VERY LOW. I'm still not sure what we are going to do. I'm on the fence and can understand the benefits of getting it done, but I'm also scared. My husband is 100% against it, though, and it's difficult to sway his decision. I think we will stick to a gluten diet (as much as it kills me to see her in pain) until we both can agree on something.

Thank you all for your input.

I understand not wanting to undergo an invasive procedure, but this one is necessary. We opted to forgo endoscopy with our seronegative teens as they were willing to go gluten-free on their own due to frustrations with symptoms. We cannot go back, but each of them along with their father and I would say....hell, yes! To endoscopy if we knew then what we know now. You can't replicate this moment in time.
BlessedMommy Rising Star

^Yes.

 

I'm putting my kids through a gluten challenge to finally end limbo land and if I had it to do over, I would've never tried to take them gluten free without a diagnosis.

 

I find it hard enough as an adult without a diagnosis, though I've been able to adapt over time, but for kids it's even more difficult and realistically it's very hard to enforce a 100% celiac diet for a kid, without medical directives. Thus, for many kids, lack of diagnosis could harm their harm in the long run. Even if the diet is helping your kid, there will always be that doubt of "do they have celiac or not?" and when there are doubts, there's the temptation to cut corners or be a little less careful about cross contamination, which will harm their health in the long run if celiac is the issue. (just speaking from personal experience here with my own kids)

 

I'm fortunate that my kids are able to tolerate the gluten challenge, so that I can end this and bring us to a permanent dietary decision for them.

 

However I wasn't able to tolerate the gluten challenge and so now I'm facing the fact that a diagnosis is forever closed to me...unless of course science comes up wtih a way to get one without taking the risk of brain damaging myself.

 

The best time to get a diagnosis is right now, while gluten is still in the diet.

Archived

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


  • Celiac.com Sponsor (A19):




  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      As I suspected, xanthan gum is one of the ingredients. It is a polysaccharide used as a texturing agent in many gluten-free products. It's hard to digest and causes distress for many celiacs. I can't say for sure if that was the problem but you might be on the lookout for it in the future. Muscle spasms can be caused by magnesium deficiency. Are you taking any vitamin and mineral supplements? I mean some things more potent than a multivitamin?
    • Wheatwacked
      Hello @Suze046 In the western world 40 to 60 percent are low or deficient in Vitamin D.  Malabsorption from Celiac Disease, avoidance of UV from the sun and seasonal variations can result in low vitamin D.  A simple 25(OH)D test will tell you your status.  Low vitamin D affects immune system, bone health, mental health.  I keep mine around 80 ng/ml (200 nmol/L). Choline has many functions in our body.  From the neurotransmitter Acetylcholine to fat digestion.  It is made by our bodies but in insufficient amount.  The major dietary source is from beef and eggs.  The RDA is 500 mg a day.  That would be equivelant to 3 eggs or 10 cups of cooked brocolli a day.  Choline is a significant portion of biliary phospholipids and is a crucial element for bile function.n.  I found taking Phosphatidly Choline capsules helps.  A homocysteine test can be indicative of choline deficiency.  Could we be overlooking a potential choline crisis in the United Kingdom? NIH Choline Fact Sheet Vitamin D Is Not as Toxic as Was Once Thought
    • annamarie6655
      @trents thank you so much for your response!  When i was diagnosed, I was exhibiting mainly joint pain, hair loss, bloating, and allodynia (painful feeling from non painful stimuli). The muscle spasms only started after diagnosis, and it seems to only happen when I am severely glutened. It’s only happened twice, but it definitely makes me nervous when it happens.    In regard to the pizza, thats what i saw after i got sick from it. I’m still trying to figure out how to switch to ALL certified gluten-free goods.    for the dressing, here is the ingredient list:  WATER, VEGETABLE OIL, VINEGAR, SUGAR, GARLIC, SALT, RED BELL PEPPER, ONION, CONCENTRATED LEMON JUICE, XANTHAN GUM, POTASSIUM SORBATE, HERBS, CALCIUM DISODIUM EDTA, MONOACETIN, SPICES. and the link: https://www.kraftheinz.com/en-CA/kraft/products/00068100903577-zesty-italian-salad-dressing  
    • trents
      Welcome to the forum, @annamarie6655! Are the muscle spasms and joint aches a new pattern of reaction to gluten or have you experienced these in the past? Concerning DeGiorno's "gluten-free" pizza, we have had many reports from celiac.com members of gluten reactions from consuming this product. I believe it is one of those "gluten-free" products that is made from wheat (speaking of the crust component) that has been processed in such a way as to remove most of the gluten. The FDA regs allow food companies to use the claim "gluten-free" as long as the product contains no more than 20ppm of gluten. This works for most celiacs but not for those on the more sensitive end of the spectrum. There is another industry standard known as "Certified Gluten-Free" that is stricter, requiring no more than 10ppm of gluten. Certified Gluten-Free products use the "GFCO" logo. Concerning the salad dressing, could you list the ingredients in another post or link it? There are certain other ingredients besides gluten commonly used in gluten-free manufactured food items to give them acceptable textures that give a lot of celiacs problems. 
    • annamarie6655
      Hello, so I was diagnosed with Celiacs about 8 months ago. After being diagnosed, I have been trying very hard to maintain a completely gluten-free (and celiac safe) diet.  Two of the main times I had a huge reaction, it was from: - gluten-free Digiorno Pizza w Pepperoni - Kraft Zesty Italian Dressing (this was in canada if that changes anything) Both are marked as gluten-free. Following eating these items, I had a severe bout of diarrhea, uncontrollable and heavy muscle spasms throughout my whole body, and aching throughout every joint.   If these are both gluten-free, why would I be reacting to them? Should I be worried about a separate allergy?  In regards to the muscle spasms, should I follow up with someone about that?
×
×
  • Create New...