Worried Mom having an emotional night

[Aries74]

I just signed up 5 minutes ago so I haven't figured out how this site works yet, don't hold that against please. My 16 yr old son may have celiac disease.We are just beginning the process of finding out. The backstory is a yr ago he complained constantly of joint pain so he was tested for arthritis & etc with negative results.Dr put him on ibuprofen daily. Fast forward 6 months & he is having horrible stomach pain & vomiting. He is treated for a stomach ulcer & taken off of ibuprofen.We seem to have gotten the ulcer resolved but stomach problems remain. He vomits every morning, has chronic diarrhea, abdominal pain, headaches, joint pain, abdominal discomfort & says he just feels horrible every minute of every day. This started last June & is still going on.He has lost well over 30 pounds & is still losing. He has no appetite & wants to sleep all the time. The doctor kept trying to treat him for anxiety & depression & I kept telling her there's more going on. 1 week ago she put him on a strict gluten free diet to see of he would respond to that before ordering further tests. I'm just scared tonight. I'm looking at him & watching him lose wait, not eat, feel sick & I'm lost. I feel terribly alone & worried. Can you offer any info about your own story that would be similar to what you hear about my son? Any encouragement?  Sound familiar? What do I need to he doing for my son?

[cyclinglady]

First, get another doctor!  Seriously, this doctor knows nothing about celiac disease (very common as doctors can not know everything), but she should have at least Googled it!  (There is a doctor website that helps them diagnose patients along with all their years of training).  

All celiac disease testing requires a patient to be on a full gluten diet.  This includes blood tests and intestinal biopsies.  If off gluten  for as little as two weeks, the tests can be invalid.  He would be stuck in diagnostic limboland!  

If he does have celiac disease, he would takes MONTHS to heal.  Why?  It takes time to really learn the gluten free diet.  It has a steep learning curve.  One week of being gluten free will do nothing.  It takes time to heal intestinal damage.

Please get him back on a diet full of gluten and get his blood drawn.   As a mother of a 17 year old, I would push for a Gastroenterologist consult.  It is not normal for a kid to be so sick!  Other issues like Crohn’s Disease, SIBO, etc. should be ruled it.  How was his ulcer diagnosed?  By his Gastroenterologist?  Does he have H.Pylori?  Did you know that ibuprofen can cause intestinal damage?  Celiac disease can cause joint issues, but so can rheumatoid arthritis.  Consider a rheumatologist if he does not have celiac disease.  

So many things are off.  As a parent, research/knowledge is the best strategy for helping your son.   Here are some links:

http://www.cureceliacdisease.org/screening/

https://www.verywellhealth.com/celiac-disease-blood-tests-562694

What if he has celiac disease?  He will get well.  It is simply treated with a lifelong diet.  

 

[GFinDC]

Hi, CL has it right.  He has to eat at least some gluten every day to keep the antibodies active and in numbers they can test.  They should do a test called a full  celiac panel.  It includes gliaden antibody tests for DGP IgA, DGP IgG, ttg, serum IgA, and EMA.   After a positive  blood test for gliaden antibodies, they would do an endoscopy to check for damage to the small intestine.  Usually the endoscopy  is done some weeks later.

I agree, don't give him ibuprofen or Tylenol either.  Plain aspirin is much safer than either of those.  He may also have trouble digesting dairy.  Celiac can cause damage to the small intestine lining that digests dairy sugar.  So he may feel better if he stops dairy and switches to non-dairy foods.  Lactaid milk may be ok.  Going dairy free won't affect the celiac testing.

Try doing an web search for doctors and celiac in your area.  Try to find one that has some experience with celiac.  You may even find a support group in some areas.

[Aries74]

Thank you both very much for responding. I definitely have some work to do. #1 is finding a doctor in my area that has a specialty in treating celiac disease!

[Ennis-TX]

2 minutes ago, Aries74 said:

Thank you both very much for responding. I definitely have some work to do. #1 is finding a doctor in my area that has a specialty in treating celiac disease!

If this fails and traveling is not a option, keep him on a gluten diet eating at least 1-2 slices of bread a day (try the evening and sleeping off the pain), and ordering the test online. There are places you can do this now like letsgetchecked.com and everyly well, still not a full panel but better then nothing, and you might be able to then see about tracking down a GI doctor to get the scopes, do insist on getting a double scope to check the large and the small. Sometimes it can be multiple issues.

Keep a food diary and record everything he eats and symptoms with times and amounts, start keeping track now as other issues with foods are common and will help everything. As mentioned removing diary will make stuff easier, if he keeps having issues with gas, going to a lower carb diet and removing fermentable foods like sugars, beans, etc might help. I find the easier food to digest being Almond meal porridge, but remember he needs to still have that gluten daily so add in some flour, or have him eat a few slices of toast a day til testing is all done.

[cyclinglady]

I did not mean to imply that ibuprofen is not safe, but when prescribed by a doctor to give daily to a kid for maybe months without knowing the root cause of the symptoms is wrong in my non-medical opinion.  Ibuprofen is a drug (even if available over the counter) and all drugs have risks and benefits and should be researched.  It has two black box warnings that the FDA has issued.  The black box is the highest safety (warning) notification and yes, ibuprofen is a over the counter drug!  

https://www.fda.gov/ForConsumers/ConsumerUpdates/ucm453610.htm

Many things can damage the gut besides celiac disease and those should be ruled out:

https://www.cureceliacdisease.org/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease/

My heart goes out to you and your son.  No parent likes to see their kid in pain.  Please keep advocating for him and we are happy to help.  We are not doctors, but we have gone through diagnostic hardships (e.g. “This is all in your head.”) and we definitely have gluten issues.  If he does have an autoimmune disorder, this is the best one to get because it can safely be treatable.  

[cyclinglady]

@Ennis_TX — love that online lab testing option.  Love that in the US you can order a test online and walk into a local lab to get blood drawn.  Make sure Quest or LabCorp is used as the final processor.  They are the best.  Skip genetic testing because 30% or more of the population carries the genes that could develop into into celiac disease but a a tiny amount actually do. Genetic  testing helps rule out celiac disease and does not diagnose it!  

Here is an example:

https://www.walkinlab.com/autoimmune-tests/celiac-disease.html

[tessa25]

Since we're talking about online testing and I'm doing it regularly to monitor my healing, here's what I know:

The full celiac panel includes:

TTG IGA
TTG IGG
DGP IGA
DGP IGG
EMA
IGA

You can either have a gastroenterologist order the full celiac panel plus whatever else they typically test for, or you can order your own test at a site like walkinlab.com. At walkinlab.com it's called the celiac comprehensive test and costs $298.00 (not covered by insurance). Then if any one test comes up high you can give it to your gastroenterologist so they can do an endoscopy. The blood draw is done at your nearest Labcorp. You get your results in less than a week at walkinlab.com .

 

[tessa25]

I'm so sorry, but I think online testing services require the person to be 18 years old. So my info is useless to you.

 

[Aries74]

You all are awesome for taking time to respond & share information. I appreciate it very much. I received some great info. Thank you!

[Awol cast iron stomach]

Aries74,

The knowledgeable members have given you all the details one could hope for, so all I can add is I wish you strength and speedy clarity during this trying time for your son. I wish you and your son well on this path. May all be reveal ASAP, so he can be on his way to health and healing. Your both in my thoughts.

Best wishes

[frieze]

On 12/14/2018 at 1:41 PM, tessa25 said:

I'm so sorry, but I think online testing services require the person to be 18 years old. So my info is useless to you.

 

it may work, since it is parents requesting.  kid could not do on his own.

[I.M.Celiac]

Dear Aries74,

First, you are an awesome mom.

I had most of these symptoms your son had. It took 2 endoscopies for a celiac diagnosis because my now-former GI forgot to look the first time.( I had an ulcer as well.) I felt like I was 70, not 43. All symptoms are gone now. Still can’t believe it. I am very strict or I get very ill soon afterwards.

Heads up on the “It’s all in your head”vibe mentioned by others. Run away from those people. It will save you years and tons of money.

If your son does have celiac, the learning curve is steep but many young people are ok with friends skipping dairy or gluten or nuts now. (Older genetic relatives can be pretty lame about it though ironically, it is genetic and they may have secretly it!?) Your family will get great at reading labels and the certified gluten-free stamp is easy to spot nowadays.

Keep an eye out for “modified food starch”. It is gluten and it can trip you up. 

My heart goes out to you! Finding the right doctor and diagnosis is key.

Good luck!!