Son is Suffering

[KayO1969]

My son is 15 and within the last 2 months he has lost over 50 pounds is complaining of severe left lower quadrant pain, joint pain, abdominal pain, sweating excessively, and is extremely nauseated  - usually after eating and can go on for hours. He had blood work done on August 26, 2021 for celiac, but the hospitals lab didn't process the blood. We went to our local Children's hospital and they redid all of his blood work. How long does the celiac serology cascade take? they told me about 5 days. In the meantime he started Prilosec 40mg, and Zofran for the nausea - nothing is coming close to helping him. I am worried about the results because he won't eat due to the pain he goes through. Would 3 days not having gluten affect the results?

[trents]

3 days off gluten prior to the serum draw would probably not have much effect on the results. Having said that, if he has lost 50 lb. in two months with serious nausea, etc. I would be more concerned about low gluten consumption leading up the the three day hiatus. The recommendation for a gluten challenge leading up to the serum antibody test is a minimum of 6-8 weeks of two slices of wheat bread daily or the equivalent amount of gluten from other wheat sources. In conjunction with what I said about the weight loss and possible low gluten consumption for sometime, his total IGA may be low which would skew the celiac antibody readings toward the low side.

[MM19]

6 hours ago, KayO1969 said:

My son is 15 and within the last 2 months he has lost over 50 pounds is complaining of severe left lower quadrant pain, joint pain, abdominal pain, sweating excessively, and is extremely nauseated  - usually after eating and can go on for hours. He had blood work done on August 26, 2021 for celiac, but the hospitals lab didn't process the blood. We went to our local Children's hospital and they redid all of his blood work. How long does the celiac serology cascade take? they told me about 5 days. In the meantime he started Prilosec 40mg, and Zofran for the nausea - nothing is coming close to helping him. I am worried about the results because he won't eat due to the pain he goes through. Would 3 days not having gluten affect the results?

Hi, If I understand correctly, your son had the Celiac *Cascade* bloodwork, which (as I understand it) is the test to see if he has the GENES for Celiac.  Whether or not he ingested gluten has no effect on this test. If he doesn't have either of the 2 genes for it, then he can't possibly have Celiac and then you'll need to do some more digging to find out what is going on in his gut.  I am so sorry your boy is dealing with such misery, and whether it's Celiac Disease or something else, I hope the docs figure it out soon and that he recovers quickly!

 

[trents]

The celiac "cascade" panel is not genetic testing. It is a comprehensive panel that looks at multiple antibodies that can be elevated with celiac disease, not just the tTG-IGA which is the single most common antibody test (and often the only one) ordered by physicians checking patients for celiac disease. https://www.mayocliniclabs.com/test-catalog/Overview/89201

[MM19]

16 minutes ago, trents said:

The celiac "cascade" panel is not genetic testing. It is a comprehensive panel that looks at multiple antibodies that can be elevated with celiac disease, not just the tTG-IGA which is the single most common antibody test (and often the only one) ordered by physicians checking patients for celiac disease. https://www.mayocliniclabs.com/test-catalog/Overview/89201

My doctor order a "Celiac Metabolic Cascade" and what came back from the lab were the genetic results, (indicating I have both genes for Celiac) in addition to antibody results.  Just my experience, which is why I indicated it was my "understanding".

[KayO1969]

28 minutes ago, trents said:

3 days off gluten prior to the serum draw would probably not have much effect on the results. Having said that, if he has lost 50 lb. in two months with serious nausea, etc. I would be more concerned about low gluten consumption leading up the the three day hiatus. The recommendation for a gluten challenge leading up to the serum antibody test is a minimum of 6-8 weeks of two slices of wheat bread daily or the equivalent amount of gluten from other wheat sources. In conjunction with what I said about the weight loss and possible low gluten consumption for sometime, his total IGA may be low which would skew the celiac antibody readings toward the low side.

Thank you for your response. He was eating at least two slices of wheat bread a day until the pain became so unbearable that he couldn't stand it. He was also eating three meals a day with snacks, so his diet didn't change prior to those three days and still had the dramatic weight loss. He did eat a sandwich with wheat bread for lunch today and within 60 minutes was nauseated, and in severe pain. We are just frustrated with the initial bloodwork that wasn't done, or we could've had answers weeks ago, and moved in a different direction if it isn't celiac. A GI appoint was made today for next Wednesday. Fingers crossed that we get some type of answer, or at least an idea of what may be going on.

[KayO1969]

4 minutes ago, MM19 said:

My doctor order a "Celiac Metabolic Cascade" and what came back from the lab were the genetic results, (indicating I have both genes for Celiac) in addition to antibody results.  Just my experience, which is why I indicated it was my "understanding".

Can I ask, what signs and symptoms you were having? 

[MM19]

8 minutes ago, KayO1969 said:

Thank you for your response. He was eating at least two slices of wheat bread a day until the pain became so unbearable that he couldn't stand it. He was also eating three meals a day with snacks, so his diet didn't change prior to those three days and still had the dramatic weight loss. He did eat a sandwich with wheat bread for lunch today and within 60 minutes was nauseated, and in severe pain. We are just frustrated with the initial bloodwork that wasn't done, or we could've had answers weeks ago, and moved in a different direction if it isn't celiac. A GI appoint was made today for next Wednesday. Fingers crossed that we get some type of answer, or at least an idea of what may be going on.

It's agonizing to see our kids suffer!  I understand how frustrating it can be to get a diagnosis.  I'll be thinking of you & your son and sure hope they give you answers ASAP!!

[KayO1969]

Just now, MM19 said:

It's agonizing to see our kids suffer!  I understand how frustrating it can be to get a diagnosis.  I'll be thinking of you & your son and sure hope they give you answers ASAP!!

Thank you. 

[MM19]

13 minutes ago, KayO1969 said:

Can I ask, what signs and symptoms you were having? 

I wasn't diagnosed until age 50... was always kind of a weakling with a poor constitution.

Reasons for pursuing answers:

Enlarged liver.  In & Out of ER. Sick every time I ate, but not just gut issues, everything.  Fluid around my heart.  Hair falling out.  Miscarriages (2 of them). Fatigue, weight GAIN ( not loss!) Mostly I just felt like I was dying all the time.  And that food was killing me somehow.  Turns out, it was!  Also had my appendix rupture and that almost killed me. 

People say "Oh hard it must be" to not eat pasta or cake,  No, not really, why would you want to ingest anything that makes you feel like you're dying?

[KayO1969]

8 minutes ago, MM19 said:

I wasn't diagnosed until age 50... was always kind of a weakling with a poor constitution.

Reasons for pursuing answers:

Enlarged liver.  In & Out of ER. Sick every time I ate, but not just gut issues, everything.  Fluid around my heart.  Hair falling out.  Miscarriages (2 of them). Fatigue, weight GAIN ( not loss!) Mostly I just felt like I was dying all the time.  And that food was killing me somehow.  Turns out, it was!  Also had my appendix rupture and that almost killed me. 

People say "Oh hard it must be" to not eat pasta or cake,  No, not really, why would you want to ingest anything that makes you feel like you're dying?

My son keeps stating that he feels like he's dying. He never wants to go to the doctor's, now he's begging me to try and have him admitted to the hospital, because he's in so much pain. He has a high pain tolerance, so I know he's hurting. That's the worst part for me. Feeling helpless, not being able to take his pain away. His whole body hurts not just his gut. Whatever is going on it's systemic and affecting his whole body, joints, migraine headaches, muscle aches, along with left lower quadrant pain, and many others that are too long to list. When the doctor palpated the lower left quadreant he pushed her away and screamed in pain. The only organ relay located there is the small intestine. For the last 4 years he's been in and out of the hospital for abdominal pain, but they could never find anything wrong. Fingers crossed we get answers soon.

[MM19]

7 minutes ago, KayO1969 said:

My son keeps stating that he feels like he's dying. He never wants to go to the doctor's, now he's begging me to try and have him admitted to the hospital, because he's in so much pain. He has a high pain tolerance, so I know he's hurting. That's the worst part for me. Feeling helpless, not being able to take his pain away. His whole body hurts not just his gut. Whatever is going on it's systemic and affecting his whole body, joints, migraine headaches, muscle aches, along with left lower quadrant pain, and many others that are too long to list. When the doctor palpated the lower left quadreant he pushed her away and screamed in pain. The only organ relay located there is the small intestine. For the last 4 years he's been in and out of the hospital for abdominal pain, but they could never find anything wrong. Fingers crossed we get answers soon.

Oh, this is scary!  I hope they've been able to do some imaging (CT scan?  XRays?) since he is in agony.  When I was in my late twenties I had terrible gut pains, was very thin, had my first colonoscopy.  I had several ulcerations inside my colon... biopsies showed NO ulcerative colitis or Crohn's, but they weren't sure what it was... until twenty three years later.  Celiac disease potentially affects every part of your body.  My son diagnosed at 19.  Gets extreme fatigue, brain fog, peripheral neuropathy and joint pain when he gets "glutened".  It's really hard for both of us, we do not eat out because of cross contamination... even a molecule of gluten and we will suffer for days afterwards.  I wish more people understood about it.

[greenbeanie]

I’m so sorry your son is going through this. It’s good that you have a GI appointment for next week, but that’s still a difficult wait given his current pain. Have you been able to speak to a nurse (not just the scheduler) at the GI’s office about what to do in the meantime? Now that you have the appointment scheduled, he might be considered a patient there and you may be able to get a call through for medical advice from their office for the short term, until his appointment.

[KayO1969]

50 minutes ago, greenbeanie said:

I’m so sorry your son is going through this. It’s good that you have a GI appointment for next week, but that’s still a difficult wait given his current pain. Have you been able to speak to a nurse (not just the scheduler) at the GI’s office about what to do in the meantime? Now that you have the appointment scheduled, he might be considered a patient there and you may be able to get a call through for medical advice from their office for the short term, until his appointment.

Yes I spoke to the nurse. He currently taking 40 prilosec, zofran, and tylenol for the pain. The nurse said to just contiue what were doing. Today was somewhat of a better day, at least so far.

[RMJ]

Five days for results sounds about right.

My last celiac serology took three days to get results but it was not a cascade.   Usually with  the cascade they do some of the tests, and if there is a positive they then do more, so that could take longer.  It could also take longer if they have to send the serum to a different laboratory, plus there could be a delay due to the labor day long weekend.

I hope you get the answers soon.  It’s great that you have an appointment next week with a GI - it can often be a long wait to see a specialist.

[fllstuart77]

He needs an endoscopy done...   and a CT scan with oral and IV contrast..

Unless the blood work comes back and is 100% Celiac..

losing 50 pounds in 2 months is definitely something Celiac would do...  unless he just isn't eating anything

[KayO1969]

11 hours ago, fllstuart77 said:

He needs an endoscopy done...   and a CT scan with oral and IV contrast..

Unless the blood work comes back and is 100% Celiac..

losing 50 pounds in 2 months is definitely something Celiac would do...  unless he just isn't eating anything

He was actually eating more than normal. The reason we are going to the GI dr. is for scheduling endoscopy. Thanks to stupid insurance plans we have to do it step by step....😕

[fllstuart77]

11 hours ago, KayO1969 said:

He was actually eating more than normal.

then its probably celiac