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Johnny B

14 Yr Old Son Coeliac, Hypothyroid, And Eating Disorder

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Hi everyone, John from Scotland here.

 

Our 14 yr old kid has been having serious tummy troubles for nigh on 3 years now and the poor mite has had the complete run around and misdiagnosis.

 

He has had tummy pains with constant cycles of diarrhoea and constipation, gas and bloating. Every time we took him to a doctor we were told that it was in his head, or "stomach migraines", whatever they are?

 

I knew there was no way a kid should be having such troubles for so long and fought like a Turk (alienating doctors along the way - being thrown out of surgeries) to have further tests carried out.

 

Two years ago his blood counts showed autoimmune hypothyroidism, and it then clicked with me that Coeliac might be the culprit. His bloods showed normal (so they say - they don't give us a look at the results) and they sent him off home with his levothyroxine program with follow up appointments six months later. (Why? I'll never know)

 

Anyway, between his last hospital out-patient appointment last September, and his next appointment in March, he lost 10 kilos in weight and started calorie counting, taking an interest in weights of food, only eating what you would consider a healthy diet. We weren't alarmed at first, he was deciding to eat a healthy diet which we encouraged. We then started to notice the weight dropping off him around February this year.

 

When weighed at appointment in March, they recorded the 10 kilo weight loss and still booked him in for routine appointments with dietetics and psychology services. I went mental at them, saying that they should have been extremely alarmed at the sudden and very drastic weight loss, and fought to have his appointments brought forward somewhat. In the next three weeks he lost another 3 kilos.

 

Cutting a long story short, they carried out more blood screening and got equivocal results which they weren't taking too seriously, even though the indication of autoimmune was already prevalent. 

 

He had a the endoscopy/biopsy under gen anaesthetic 2 weeks past Tuesday, and we got the results on Thursday just there. Coeliac.

 

Then the consultant phoned to say that he had spoken to the gastro team who carried out the endoscopy who suggest (according to him) that Coeliac might be starting up (eh? - the atrophy is either there or not?) and we feel that he is covering his backside for not sending him for endoscopy a lot sooner, and now he has a severe EDNOS eating disorder.

 

Anyone else experienced this with their children?

 

I'm interested to know if the eating disorder is linked to autoimmune, and if it will subside as a gluten free diet sees his physical health recover?

 

All the best everyone.

 

John.

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See.. what I would like to know is this....

 

If they blood tests are looking for antibodies, and there are antibodies present, how can this be an equivocal result?

 

Do normal people without coeliac produce these antibodies? If not ( that's my understanding) then surely there is no such thing as a borderline test result?

 

Surely, you either have this, or you don't?

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I am so sorry to hear that it took so long for your son to get a diagnosis.  He may not have an eating disorder, but I'm not doctor and this is just story about my family.

 

Like me, my Dad's gallbladder start to not function.  He didn't have gallstones (this is back before they invented the HIDA scan) and even though we told his doctor about the family gallbladder curse, they refused to treat him.   It hurt to eat, so he stopped eating (well consumed chicken broth and Pepsi).   Within 30 days, he dropped 30 pounds.  His doctors were astounded.  He must have cancer!  They ran test after test, but no cancer.  Finally, they agreed to the surgery.  When they took out his gallbladder is was starting to rot.  They said it was "diseased".    The good news is that they found an abdominal aneurysm and two months later, he had the repair done. 

 

So, if you were in pain the moment you started to eat -- you would avoid eating!  

 

As his intestines heal, he'll be able to eat and regain weight.  right now, he should eat lots of healthy easy-to-digest whole foods and try to identify any food intolerances (e.g. milk).  Check out the newbie thread:

 

https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

 

 

Good luck.  

 

P.S.  Six months way too long to go without getting a thyroid re-check.  Anyone just getting on medication should be re-checked every 6 weeks.  When the results are stable, then you can go 6 months to a  year.  

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See.. what I would like to know is this....

 

If they blood tests are looking for antibodies, and there are antibodies present, how can this be an equivocal result?

 

Do normal people without coeliac produce these antibodies? If not ( that's my understanding) then surely there is no such thing as a borderline test result?

 

Surely, you either have this, or you don't?

Others will surely comment and will have more expertise.

 

My blood test was "mildly" celiac (borderline).  My biopsy showed moderate to severe damage (Marsh Stage 3B).  

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Stomach migraines!  Ha!

 

Years ago, one gastro told me that I might have "abdominal epilepsy" (oh, yeah, let's take away my drivers license.... :rolleyes: )  Another gastro:  IBS and prescribed bio-feedback sessions.   Went to an allergist.  It was  food allergies (milk proteins) and intolerances, along with environmental allergies.  Eliminated milk, eggs, garlic, mushrooms and nuts.  No more intestinal issues.   :)

 

And that "it's all in your head!", I had to take my husband along on my doctor's visit to assure them that I was not making up symptoms!

 

Okay, there are many good doctors.  Fortunately, my current gastro diagnosed me with celiac disease during a routine colonscopy and I was asymptomatic except for the Hashi's and a bit of anemia.  And my allergist?  He's the best (but now retired!) :(

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I am so sorry to hear that it took so long for your son to get a diagnosis.  He may not have an eating disorder, but I'm not doctor and this is just story about my family.

 

Like me, my Dad's gallbladder start to not function.  He didn't have gallstones (this is back before they invented the HIDA scan) and even though we told his doctor about the family gallbladder curse, they refused to treat him.   It hurt to eat, so he stopped eating (well consumed chicken broth and Pepsi).   Within 30 days, he dropped 30 pounds.  His doctors were astounded.  He must have cancer!  They ran test after test, but no cancer.  Finally, they agreed to the surgery.  When they took out his gallbladder is was starting to rot.  They said it was "diseased".    The good news is that they found an abdominal aneurysm and two months later, he had the repair done. 

 

So, if you were in pain the moment you started to eat -- you would avoid eating!  

 

As his intestines heal, he'll be able to eat and regain weight.  right now, he should eat lots of healthy easy-to-digest whole foods and try to identify any food intolerances (e.g. milk).  Check out the newbie thread:

 

https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

 

 

Good luck.  

 

P.S.  Six months way too long to go without getting a thyroid re-check.  Anyone just getting on medication should be re-checked every 6 weeks.  When the results are stable, then you can go 6 months to a  year.  

Cyclinglady, hi there, and many thanks for taking the time to reply.

 

They're more on top of his thyroid now. He's up to 100mq per day and his latest blood tests show that suits him.

 

I must add, I have had these same symptoms for many years. They refused to test me for Coeliac as I have put on weight. I have done a lot of digging around asymptomatic Coeliac but the more I learn the more I realise that no two people have the same symptoms for Coeliac. I also have the autoimmune thyroid disease and currently on 50mq to get me started for past 2 months. Due a blood test shortly and will be insisting on Coeliac screening. I am convinced I too have this disease and often find mucous in my loose stools. I have diarrhoea every other day.

 

I have switched my breakfast and meals from fatty sausage in the morning to a sensible salad and ham bread roll, and still having pains an hour or two after eating. The sausage (which I love) runs the guts out me right away, and I know sausage is bulked out with gluten containing products.

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There are sausages that don't contain gluten and are fresh/no preservatives (not nitrates which probably not good for everyone).  I buy bacon, lunch meats, and ham that do not contain preservatives or gluten.  You have to eat them within a few days or freeze the balance though.

 

As far as your weight, my over-weight -hashimoto's thyroiditis brother, is in the process of getting tested.  (He also shares my milk and egg allergies.)  You do not have to be underweight to have celiac disease.  Once a family member has been diagnosed with celiac disease, other 1st degree members should be screened:

 

Here's a link to the University of Chicago's celiac disease website:

 

http://www.cureceliacdisease.org/living-with-celiac/guide/screening

 

Here's another link to the University of California at San Diego:

 

http://www.cureceliacdisease.org/living-with-celiac/guide/screening

 

Arm yourself with credible research and take it to your doctor! 

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My cousin was diagnosed with celiac disease as an adult but she had an eating disorder for years as a young adult and teen. Eating disorders aren't uncommon among celiacs.

How are your son's test results for hypothyroidism? I tend not to trust docs when it comes to thyroid tests as the normal range includes about half of all hypothyroid patients. Ideally his TSH should be close to a 1, and free T3 and free T4 should be in the 50-75% range of your lab's normal reference range. A TSH test isn't enough, and it is close to meaningless if freeT3 is low.

I hope he is feeling well soon.

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My cousin was diagnosed with celiac disease as an adult but she had an eating disorder for years as a young adult and teen. Eating disorders aren't uncommon among celiacs.

How are your son's test results for hypothyroidism? I tend not to trust docs when it comes to thyroid tests as the normal range includes about half of all hypothyroid patients. Ideally his TSH should be close to a 1, and free T3 and free T4 should be in the 50-75% range of your lab's normal reference range. A TSH test isn't enough, and it is close to meaningless if freeT3 is low.

I hope he is feeling well soon.

We don't get told what levels his blood tests are. They must think we're incapable of processing the information, despite the fact they know that my partner is a registered nurse, with a degree to her name, working with gastro patients.

 

I spoke to the consultant on Monday. He's been avoiding speaking to me. He says that my son looks to have the "beginnings of coeliac". I said that this didn't sit with me as my son has had symptoms for three years and has been hospitalised thrice now with severe faecal loading, amongst weight loss issues. They haven't even sent us the results of his biopsy so we don't know what those say.

 

I've called a meeting with the Primary Care management team and the top consultants to discuss his care plan. I had been writing complaints throughout stating that I knew my son had a medical condition which was causing his illnesses, and that the length of time between appointments, and length of time for referrals was totally unnecessary and just delaying my son's diagnosis. They of course deny all this in formal responses, and then the biopsy showed I was right to chase this diagnosis.

 

He had previously tested negative in bloods, then tested borderline twice recently.

 

I ended up accusing the consultant (endocrinologist) of having missed the symptoms since the outset, and failed to send him for biopsy despite what negative bloods for Coeliac state. I asked if there really is an equivocal blood test result for Coeliac stating "surely you're either producing antibodies as an autoimmune response, or you're not", but my doctor seems to think that healthy people have positive blood results for Coeliac and that negative results indicate no Coeliac.

 

Confusing.

 

So the consultant says if we're not happy we can request a new team of clinicians, so that's what I have done.

 

We feel they're prepared to lie to us, so there's no trust there.

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A lot has been learned about celiac since most of those doctors went to medical school.  Some doctors don't keep current.  It is an incredible shame.  I went through the same thing with many doctors.  Fortunately my son has a very good pediatrician and she initiated our diagnoses after my doctors missed it for 40 or so years.

 

Celiac disease could be the cause of the other autoimmune diseases and the "eating disorder".  The loss of weight might be from the celiac disease developing and not from an eating disorder at all.  I hope that things clear up on the gluten free diet.  I wish you all the best learning how to eat this way.  It can seem tough at times, but it is well worth the effort.

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