Does my daughter have Celiac disease?

[heatherann]

We saw a Pediatric GI a couple weeks ago to see if we could figure out the reason for my 6-year-old's random, minor tummy aches that she's been having since toddlerhood.  At first, the doctor suspected Chronic Functional Abdominal Pain, but said we'd do bloodwork.  Got a phone call last week stating that she has a minor wheat allergy (1 on a scale from 0-6), and one elevated marker for gluten, so she scheduled an upper scope and colonoscopy.  This morning we got the results of the biopsies, which the doctor said was negative for Celiac disease, but that there's minor irritation on the colon.  She called it Lymphocytic Colitis, but said it was nothing to worry about.  Said it could be cause by a virus, use of NSAIDS, etc.  So, she prescribed my daughter Sulfasalazine, which is an NSAID.  So naturally, I start researching, because it seems weird to me that NSAIDS can cause this, yet can also heal it.  ???  Anyway....none of it sounds like my daughter.  Apparently the main symptom is diarrhea, which my daughter has never had, and it is rare in children.  Also, WBC is usually elevated with this, and my daughter's WBC showed low at 4.1 when they did her bloodwork.  

When I asked if my daughter should stop gluten because of the lab results, the doctor said, "It's up to you.  I mean, if you have the choice between giving her wheat bread or white bread, just give her white."   What?????

I'm beyond confused.  

Edited April 18, 2018 by heatherann

[cyclinglady]

46 minutes ago, heatherann said:

We saw a Pediatric GI a couple weeks ago to see if we could figure out the reason for my 6-year-old's random, minor tummy aches that she's been having since toddlerhood.  At first, the doctor suspected Chronic Functional Abdominal Pain, but said we'd do bloodwork.  Got a phone call last week stating that she has a minor wheat allergy (1 on a scale from 0-6), and one elevated marker for gluten, so she scheduled an upper scope and colonoscopy.  This morning we got the results of the biopsies, which the doctor said was negative for Celiac disease, but that there's minor irritation on the colon.  She called it Lymphocytic Colitis, but said it was nothing to worry about.  Said it could be cause by a virus, use of NSAIDS, etc.  So, she prescribed my daughter Sulfasalazine, which is an NSAID.  So naturally, I start researching, because it seems weird to me that NSAIDS can cause this, yet can also heal it.  ???  Anyway....none of it sounds like my daughter.  Apparently the main symptom is diarrhea, which my daughter has never had, and it is rare in children.  Also, WBC is usually elevated with this, and my daughter's WBC showed low at 4.1 when they did her bloodwork.  

When I asked if my daughter should stop gluten because of the lab results, the doctor said, "It's up to you.  I mean, if you have the choice between giving her wheat bread or white bread, just give her white."   What?????

I'm beyond confused.  

Welcome!  

Chronic Functional Abdominal Pain?  That is up there with Irritable Bowel Symdrome which is also known as “I Be Stumped.”  Ugh!  

I would suggest getting copies of all her laboratory reports.  Which celiac blood tests were given?  How many biopsies and from what location?  What exactly was on the pathologist’s report?  Your child may not have celiac disease or she may just be starting.  Note that intestinal damage can be patchy and the small intestine when stretched out is the size of a tennis court. 

With a minor wheat allergy and an elevated celiac antibodies test, suggesting white bread or wheat tells me that you do not have a celiac-savvy GI.  Get a second opinion. I do not understand why a colonoscopy was even ordered when there was a positive on the celiac panel.  Sounds like someone might be paying more for malpractice insurance or his kid’s college.  

Of course, I am jesting.  But I am serious about the second opinion.  Which celiac test was positive?  Just curious.  

 

Edited April 18, 2018 by cyclinglady

[heatherann]

On 4/18/2018 at 3:42 PM, cyclinglady said:

Welcome!  

Chronic Functional Abdominal Pain?  That is up there with Irritable Bowel Symdrome which is also known as “I Be Stumped.”  Ugh!  

I would suggest getting copies of all her laboratory reports.  Which celiac blood tests were given?  How many biopsies and from what location?  What exactly was on the pathologist’s report?  Your child may not have celiac disease or she may just be starting.  Note that intestinal damage can be patchy and the small intestine when stretched out is the size of a tennis court. 

With a minor wheat allergy and an elevated celiac antibodies test, suggesting white bread or wheat tells me that you do not have a celiac-savvy GI.  Get a second opinion. I do not understand why a colonoscopy was even ordered when there was a positive on the celiac panel.  Sounds like someone might be paying more for malpractice insurance or his kid’s college.  

Of course, I am jesting.  But I am serious about the second opinion.  Which celiac test was positive?  Just curious.  

 

Thank you for your response!  Sorry it took me so long to get back to you....it's been a stressful week.  To answer your question, I do not know which celiac blood tests were given.  For some reason, the lab work results that I have access to online don't show which ones she did.  So, I'm calling this week to request those (again).  To throw another loop in it, I received another call from the doctor this week, saying that my daughter is lactose intolerant, according to the biopsy.  This, after she told me that the dairy allergy blood results were normal.  

She said I could remove dairy if I wanted, but I didn't have to.  ???  Basically, she just wants me to give my child Sulfasalazine for the next 6 months.  I'd rather change her diet and see if that helps first.  I'm so done with this doctor!  I need to find someone who I can take all these results to, and they can read them for me.

[cyclinglady]

Well, you can always post the result here.  Include all the lab ranges.  We are not doctors, but we can read celiac lab results. Even the pathologist’s report (exact wording) would be useful.  I would definitely get a second medical opinion. 

So, the biopsies revealed a lactose (milk sugar) intolerance.  Why would he NOT recommend going lactose free?  Ugh!  Take her off all dairy for a week or so.  Then start adding in dairy that has the least amount of lactose like hard cheeses or yogurt.  Those items through fermentation have had lots of the sugar removed by the bacteria.  The last bit of dairy to add back is regular milk or ice cream.  

If she has celiac disease, going lactose free can help with intestinal symptoms, but the damage villi that releases the enzymes to digest lactose will still be damaged.  Once a celiac heals, they often can then digest lactose again, unless you are part of the world’s population who can not digest lactose for genetic reasons (e.g. not historically herders).  

The med prescribed?  I would get a second opinion preferably from a Ped GI.  I would make sure she has a firm diagnosis for the Colitis which is commonly linked to celiac disease and may resolve on a gluten free diet.  This drug is powerful and we are talking about a kid.  

So, post the results and get a second opinion.  In the meantime, get her off lactose ASAP.  

I am so sorry that you both are dealing with this!  

[squirmingitch]

 

Oh golly, another parent going through a nightmare with a doc who seems to be let's just say "less than informed".

I agree with cyclinglady. Get copies of all labs & bloods, post them please & get a second opinion pronto. Meanwhile cut the dairy out.

And mom...... {{{{{{{HUGS}}}}}}}}}}}

[heatherann]

@cyclinglady & @squirmingitch Thank you both so much.  I finally got her labs back, so I'll post them here to see what you all think.  I'm having a difficult time with the sizing, so I may have to add them all separately.  

[heatherann]

Well.....it just isn't letting me upload the rest.  I'm not sure what I'm doing wrong..  I've resized them, but it just isn't working.  

[cyclinglady]

59 minutes ago, heatherann said:

@cyclinglady & @squirmingitch Thank you both so much.  I finally got her labs back, so I'll post them here to see what you all think.  I'm having a difficult time with the sizing, so I may have to add them all separately.  

None of this indicates testing for celiac disease.  The wheat and milk could be IgE allergies, but I would go to an allergist for confirmation as blood tests for allergies are not that accurate (like 50% accuracy).  If you have a celiac disease antibody test result just type it.  

In any case, I would consider getting a second opinion.  Bring all the medical records and lab results to that consultation to save time and money.

[heatherann]

[squirmingitch]

18 minutes ago, heatherann said:

OK, these are the celiac tests - there are 2 more test in the full panel & those 2 are DgP tests but it really is a moot point here b/c she is showing positive on the TtG IgA & the Ttg IgG. According to the Mayo Algorithm the next step is to proceed to an endoscopic biopsy. See:

Open Original Shared Link

 

[cyclinglady]

She had a negative biopsy, but a positive on the TTG IgG.  I would have to lean with the GI and say that your daughter does not have celiac disease, at least for now (it can develop at any time).  Going forward, You can either keep her on  a full gluten diet and ask later for the DGP IgA and DGP IgG tests if you think you need to retest her in a year or two  since those can be better at catching celiac disease in young children (google it).  The next option would be to trial the gluten-free diet.  My kid had random tummy aches, (she tested negative on the complete celiac panel).      We noticed them while she was in the first grade.  By third grade, she was diagnosed with dyslexia.  Not wonder she was so stressed!   She does have Raynaud’s and a family history of autoimmune on both sides, so her chances of celiac disease are much greater down the road.  Finally, ask for an allergist referral.  Confirm your daughter  is reacting to wheat.  

I hope you figure it out.  I know how hard it is to see your child in pain.  ?

[heatherann]

1 hour ago, cyclinglady said:

She had a negative biopsy, but a positive on the TTG IgG.  I would have to lean with the GI and say that your daughter does not have celiac disease, at least for now (it can develop at any time).  Going forward, You can either keep her on  a full gluten diet and ask later for the DGP IgA and DGP IgG tests if you think you need to retest her in a year or two  since those can be better at catching celiac disease in young children (google it).  The next option would be to trial the gluten-free diet.  My kid had random tummy aches, (she tested negative on the complete celiac panel).      We noticed them while she was in the first grade.  By third grade, she was diagnosed with dyslexia.  Not wonder she was so stressed!   She does have Raynaud’s and a family history of autoimmune on both sides, so her chances of celiac disease are much greater down the road.  Finally, ask for an allergist referral.  Confirm your daughter  is reacting to wheat.  

I hope you figure it out.  I know how hard it is to see your child in pain.  ?

Thank you both so much.  I'm still trying to figure out how to post the other 2 lab test papers.  

@cyclinglady We also have a family history of autoimmune on at least my side of the family, unsure about my husband's.  I have wondered if this could be related to my daughter's speech issue.  She has (diagnosed by me) word-final disfluency, which is a type of stutter, but it isn't treated the way normal stuttering is.  In fact, I'm still searching to find someone who can work with her.  

She has, for the most part, stopped complaining of tummy aches since we started her on a lactose-free diet.  She does have a lot of random leg pain/weakness, which kinda freaks me out a bit, but it hasn't kept her down.  My husband attributes it to growing pains, and I pray he's right.  

[heatherann]

1 hour ago, squirmingitch said:

OK, these are the celiac tests - there are 2 more test in the full panel & those 2 are DgP tests but it really is a moot point here b/c she is showing positive on the TtG IgA & the Ttg IgG. According to the Mayo Algorithm the next step is to proceed to an endoscopic biopsy. See:

Open Original Shared Link

 

Thank you for that link!  I must be looking at it wrong, because I only saw where she was positive for the Ttg IgG.  Is the IgA also positive?

[cyclinglady]

I am glad going lactose free has helped your daughter.  A huge chunk of the world’s population can not tolerate lactose for genetic reasons and she might be one of them.  

If you are in the US and are in the public school system, you should be able to get your daughter evaluated.  We had that done for both the dyslexia and my daughter’s delayed (or so we thought) speech.  It allowed us to come up with a plan and consult with experts outside of the school district and other adults who had dyslexia.   We opted to teach her coping skills instead of filing a 504 plan.  We did not think pulling her out of class time to work on her dyslexia would be beneficial.  We did that instead after school.   She persevered.  No accommodations were made for her because we thought that in the future, no employer is going to accommodate her either.  Plus, her class had iPads starting in the 6th grade and spell check was an amazing feature for her.    She has since learned to memorize every single English and Spanish word.  Every word is a sight word.  There is no sounding out words for her.  Simple words like “what” are not recognized or mis-spelled even today.  Amazingly, she has done well on the writing portion of her SAT tests.  She can not read a clock either (except digital) yet can solve a physics problem using math beyond my ability.  

But I digress.  My daughter hid her disability well and still does.  I can imagine that speech issues could cause some teasing or even bullying.  Talk to her teacher and make sure she is social.  Consider Girl Scouts (I am a Leader....one more year to go!).  Teach her to  be strong and stand up for herself.  Grade school can be brutal!  ?

Health?  If autoimmune is strong on your side, the good news is that you will be more cognizant of any developments. Unfortunately, celiac disease is the only AI that has a known trigger and a relatively easy treatment plan (okay, not easy, but can do no further harm like a pharmaceutical drug).  When my kid’s fingers turn blue (pretty freaky), I can just hand her a pair of mittens and offer a little sympathy, but then push her to move on.  

Take care.  Your daughter is lucky to have you as a Mom! 

[squirmingitch]

7 hours ago, heatherann said:

Thank you for that link!  I must be looking at it wrong, because I only saw where she was positive for the Ttg IgG.  Is the IgA also positive?

Oh no! I am so sorry! That was a 14 there & I mistook it for an H. It's blurry & pretty small. Oh my gosh I'm so sorry.

Also, somewhere along the line I lost sight of the fact that she'd already had an endoscopy. Listen to cycling lady -- she has her head screwed on right lately whereas I sure screwed UP today. 

[cyclinglady]

1 hour ago, squirmingitch said:

Oh no! I am so sorry! That was a 14 there & I mistook it for an H. It's blurry & pretty small. Oh my gosh I'm so sorry.

Also, somewhere along the line I lost sight of the fact that she'd already had an endoscopy. Listen to cycling lady -- she has her head screwed on right lately whereas I sure screwed UP today. 

Ha!  This has happened to me SO many times.  ?. I just get in a rush to reply.  Of course,  I am usually multitasking (Mom do know where my “fill in the blank” is?)

[Wheatwacked]

I feel embarrassed to ask this but, Cycling Lady, is your daughter on GFD?

There is one thing I have noticed over the past years. Most people seem to have numerous complaints about some aspect of their health. Arthritis, cataracts, gut pain, headaches, endometriosis, enlarged prostate for men or overactive bladder if you are a women, high blood pressure, high blood sugar, obesity is rampant, and on. Everyone seems to have more than one problem and the doctors are taught which drugs and treatment have been codified for each disease. It finally occurred to me that it really not likely that I have 18 separate diseases. Maybe it is one disease with multiple exacerbations. I have decided that wheat is poisonous to me and the other stuff, that always was "we don't know what causes it, really, but these drugs will cure this and that." Of course the drugs usually have side effects that are much worse than the disease itself and maybe it will help. Except the Fear that You Will Die if you don't do what the doctor prescribes.

Shortly before going gluten free, my optometrist said my intraocular pressure was high at 34. Good is around 20. High IOP like mine can lead to glaucoma. Well, it turns out that only 10% of those with high IOP actually get glaucoma. Last exam in November I was down to 20 left eye and 22 right eye. My mom had cataract surgery, then high IOP surgery by one of the top eye research schools in the world, none of which made a difference. She was type 2 diabetic, had been obese but dieted and lost half her size, and died of cardio myopathy.

Not all diseases are caused by a gluten diet, but can cause co-morbidities and symptoms that mimic and are diagnosed wrong. There are around 200 different medical complaints that have shown improvement with GFD, so having answered the question for your child is she Celiac with a rousing "Maybe", you should all go gluten free for a trial period. It is easier when everyone eats the same and could possibly have health benefits for the rest of the family. Only one way to tell. 

For years they've been promoting that Ciliac is a defect in the patient. Maybe it is not the patient but the food. We've survived a long time as the human race, why are we falling apart now. I am becoming more convinced that things like the current increase in congenital diseases like autism and type 1 Diabetes might be caused by wheat in the mothers diet acting on the embryo's systems. Only way to tell is a diet without wheat.

 

 

[cyclinglady]

@Wheatwacked — 

My daughter has been tested for celiac disease (full panel).  She has another test ordered to be taken at the end of summer.  She consumes no gluten within our home, but she does eat gluten while at school, friends and at restaurants.  She does have a high probability of developing celiac disease in the future.  Other than Raynaud’s, she is healthy.  No aches or pains, no anemia (which is how I presented), etc.  

As far as eliminating gluten for her now, I have not read that eliminating gluten may prevent other autoimmune issues from developing (no concrete studies).    I have concluded that the Standard American Diet full of processed foods (chemicals) and sugar is most likely one of the main causes of obesity, diabetes, heart disease, cancer, and other ailments too plentiful to list.  As a human race, we have been consuming  wheat for a long time.  We have not been consuming sugar and chemicals  (as least as much as we have been consuming over the last 50 years) ever.  I believe this because I have Type 2 diabetes and I am thin, exercise and now...eat a lot less sugar and processed foods.  Too late for me, but I am worried about the next generation.   I am not going to get into GMOs as that is a personal belief and I am not interested in debating it, but celiac disease was around long before GMOs were developed.  

Please do not worry about my daughter’s dyslexia.  She inherited that from her Grandfather who was a successful businessman.  She is also at the very top of her class, so she is doing well and has learned to adapt.  

 

 

 

[Wheatwacked]

I did not mean to make you angry. I think you might find this article by Dr. Meyers interesting. She specializes in autoimmunology. In synopsis: Raynauds can be a symptom of Lupis. Lupis is often associated with leaky gut, or thyroid issues. Open Original Shared Link

My issue is once the doctors tell you maybe yes maybe no we don't know what to do, but try this,  what now. It is not psychosomatic. It would be, in my opinion, beneficial to assume a gluten issue and do a trial GFD for a month, paying attention to essential vitamins, in order to rule out Celiac, as a diagnostic test.  A shame to suffer. Summer break would be a good time to try. It is embarrassing to kids to be singled out as defective because they can't eat "regular food". But I think if she is suffering enough she will jump at the chance of relief.

I respect and appreciate your knowledge in this subject. In this instance I feel you are wearing the blinders of social pressure.