Need Advice, Please!

[Niks]

Hi

 

My daughter was diagnosed in December with Coeliacs Disease. 

 

Prior to this,(June - October 2012)  her symptoms were severe abdo pain, Bloody, mucoussy loose stools, 28 lb weight loss.  Persistent vomiting.  Initially they thought Crohn's disease, so put her on steroids, which did calm down all symptoms. She had CT Scan, which showed some thickening of proximal duodenum.  Barium Meal didn't go passed her stomach, and she vomited it back up.  Colonoscopy showed inflammation.  All scopes since have been clear.  All bloods good, except B12, she needed to have B12 jabs to get this to a normal level.

 

Coeliac Diagnosis completely threw us.  She went completely Gluten Free in December and has remained entirely Gluten Free.  Her Blood results were negative for Coeliacs but her biopsies showed 'characteristics of Coeliac Disease'.  Her symptoms have not eased at all in fact she has got much worse, but now is severely constipated.  Since last October she has been hospitalised 10 times, the last time was last weekend, She needed to have colonoscopy preps to clear her out and strong pain relief.  She has also started over the last couple of months to faint.

 

She has gained back about 14lbs since May this year, the vomiting has calmed down, she was vomiting upto 12 times a day, now only 2-3 times.  At one point she couldn't even tolerate fluids, which is why so many hospitalisations.

 

It has been a very tough year.  I was wondering if anyone else had had a similar experience and if they have any ideas as to what else may be going on?  Her diagnosis now is Coeliac Disease and IBS. 

 

She has a new medication to help with the constipation  - Prucalopride, she also takes Metoclopramide and Mebeverine three times daily with Tramadol and Oramorph for pain.  Her pain is there all the time, left lower abdomen, but can be severe and I think disabling at times every day.

 

I am sorry this is so long.  Thank you for reading

 

Niks

 

 

[Niks]

I guess I have posted this in the wrong place if 400 people have viewed and still no replies?  Could someone please help me out here?  Where should I post?

 

Thank you

[Celiac Mindwarp]

Hi Niks

I think you just hit a quiet patch, but I have moved you into the parents section and hopefully you will get some replies here. It tends to pick up in the afternoon and evening.

Welcome to the board, there is very likely to be someone along at some point. Don't be afraid to ask lots of question.

Two possibilities which occur to me are hidden cross contamination and other intolerances, particularly dairy, which is fairly common in the early months. Have a look at the newbie101 thread in 'coping with' for some ideas to check for cc.

Good luck, I hope the folks here can help ( it might take a day or two for people to get back)

Mindwarp, moderator

[Niks]

Thank you Mindwarp

 

We are pretty sure there's no cross contamination.  We have nothing at all with wheat or gluten in at home and her last biopsy in March, after 3 months completely gluten free was clear.  Yet her symptoms worse than ever.

 

Would dairy intolerance cause rectal bleeding?  It is all very confusing.  I was so relieved with Coeliac diagnosis, as they initially thought crohn's but going gluten free has not helped at all with any of her symptoms.  In fact she has just progressively got worse :/

 

Niks

[mommy2krj]

Hugs to you and your daughter.

 

What are the doctors saying about the continuing symptoms? Do they even have any guesses?

 

I would maybe do a food elimination diet for a while and see if that helps. I keep seeing people writing about FODMAPS (I'm not even sure if that's the right way to spell that) and wonder if that would help get you to an answer.

 

It definitely sounds like she is still reacting to something....and severely.

Wish I had more advice but I don't have any experience with those issues. Hope you can find some answers!

[Niks]

Hugs to you and your daughter.

 

What are the doctors saying about the continuing symptoms? Do they even have any guesses?

 

I would maybe do a food elimination diet for a while and see if that helps. I keep seeing people writing about FODMAPS (I'm not even sure if that's the right way to spell that) and wonder if that would help get you to an answer.

 

It definitely sounds like she is still reacting to something....and severely.

Wish I had more advice but I don't have any experience with those issues. Hope you can find some answers!

Thanks mommy2krj.  Basically they are saying they don't know!  Initially steroids worked, so possibly Inflammatory Bowel Disease. In March though her MRE scan was clear.  She had however been on steroids for 6 months on and off.

 

My gut instinct is that it isn't just coeliacs.  Her diagnosis right now (which changes with the wind)!  is Coeliacs Disease.  Small Bowel Dysmotility and IBS. 

 

Her main symptoms have been severe vomiting and abdo pain.  Her vomiting has eased at the moment, but she is still sick everyday.  Her pain is so severe she passes out.  She initially started with bloody mucousy loose stools, that turned into chronic constipation, but she again has dark purple bleeding.

 

Can dairy cause these problems? 

[GottaSki]

Welcome Niks!

 

You already responded to me first thought -- accidental gluten getting in.  How about her medications...have you checked with their manufacturers to assure they are gluten free....pharmacies often switch generics -- this happened to my daughter again just last year and we had been gluten-free for a very long time.

 

I second using a food/symptom log along with an elimination diet.  It certainly sounds like she is ingesting something that she is intolerant of.

 

Good Luck to you

[mommy2krj]

Thanks mommy2krj.  Basically they are saying they don't know!  Initially steroids worked, so possibly Inflammatory Bowel Disease. In March though her MRE scan was clear.  She had however been on steroids for 6 months on and off.

 

My gut instinct is that it isn't just coeliacs.  Her diagnosis right now (which changes with the wind)!  is Coeliacs Disease.  Small Bowel Dysmotility and IBS. 

 

Her main symptoms have been severe vomiting and abdo pain.  Her vomiting has eased at the moment, but she is still sick everyday.  Her pain is so severe she passes out.  She initially started with bloody mucousy loose stools, that turned into chronic constipation, but she again has dark purple bleeding.

 

Can dairy cause these problems? 

How old is your daughter? I ask because my little guy is 6 and I'm having issues keeping him away from all foods....even telling the neighbor kids 1000xs that if he eats certain things they can make him really sick hasn't stopped it. *sigh* So that could always be an issue. I also have 2 teenagers that I know go and eat elsewhere (one works at McD's and the other one, while more open to being gluten free...still goes to friends houses and eats there. Neither of them came back with positive tests though.)

Unfortunately, from everything I've read since we started down this road with Celiac....it can be extreme with some people. There are those that are extremely sensitive to even the smallest particle of gluten. There are those that can't tolerate any kind of grain at all because their body reacts the same way to the grain as it does to the gluten. She could have other major intolerances dairy and nightshades (tomatoes, potatoes and bell peppers are in that family) seem to be big ones here. Or she could have an intolerance to fructose (I can't remember the exact name of that issue, sorry).

Or there's the joy of the fact that Celiac can go hand in hand with all of those diseases that she's been tested for and others. You did say her vomiting seems to have quieted down some. It can take YEARS for some people to heal from this and I've read stories of some people here that just makes my heart break for them. Given the difference in spelling and the drugs I've never heard of...I'm assuming you're not in the US...I know different countries have different measurements as to how much gluten is allowed in foods that are gluten free...so I would check into that too.

Also....have they checked her ovaries? I had a friend when I was a teenager that had to have surgery to remove cysts on her ovaries and she was in constant debilitating pain for quite a while. (I can't give any info off the top of my head as it was a long time ago!) I do know that a deficiency of B12 is common as well as vitamin D...have all her vitamin and mineral levels been checked? Her iron? If she's celiac...she's going to have issues absorbing nutrients and that can lead to all sorts of problems.

What about probiotics...taking all those meds it's a good chance that's ripping up her stomach too. My husband can't tolerate too many meds before he starts having some major issues. I know it can wreak havoc on your system causing diarrhea and constipation issues.

Sorry if this is all over the place. I feel terrible for your daughter and I hope you get some answers soon. My little guy wasn't nearly as sick and I was out of my mind....I can only imagine how worried you must be.

[nvsmom]

Poor little thing. 

 

For me, C did not let up until my hypothyroidism was adequately treated (TSH below a 1 for me). Has her thyroid bee checked yet? TSH should be near a 1 anf freeT4 and freeT3 should be in the 50-75% range of the lab's normal reference range.

 

Best wishes.

[mommy2krj]

Oh....and I have no idea if dairy can cause those problems. I do know that I am lactose intolerant. Up until recently I was able to drink milk and eat cheese with no problems but if I had ice cream or the premade hot chocolate packets from the store I could pretty much guarantee that I was going to be violently sick within a couple of hours.

Now...now I'm afraid to drink milk again because I reacted that way with just drinking milk. No issues with cheese yet but I'm keeping my milk intake to the very minimal amount. I've also lowered my son's dairy intake because he's still complaining about his stomach and it's more frequent after meals that he had milk with.

 

So...I'm sure a lactose intolerance could definitely be just as strong as issues with gluten. Or it could be that she's intolerant to casein and it has nothing to do with the lactose at all. So many different things to look at....could be all of them or none of them...that's the frustrating part. However, a lot of those with celiac become lactose intolerant for a while after going gluten free while their intestines heal.

[Niks]

J is 19.  We live in the UK.  She started with abdo pains and initially at 15 was sent down the gynae route!  Nothing was ever found At that time after having her appendix out (was fine), endometriosis ruled out.  Bowel looked inflamed on laparoscopy. Bowels at that time were not causing her a problem.

 

First signs of any problems last June was rectal bleeding.  Left lower abdo pain always there, from 15, but mostly bearable, not anymore!!

 

Colonoscopy showed inflammation, steroids given, which stopped bleeding.  Then other symptoms, vomiting, severe pain, feeling really poorly.  Referred to Gastro. 

 

Didn't make gastro appoint, was admitted to hospital for a week with dehydration, bleeding and severe vomiting.  Coeliac blood test NEGATIVE.

 

This was the pattern for months.  More scopes, clear.  Nothing visual on any scopes but biopsies showed characteristics of coeliacs in December.   Started Gluten Free Diet.  No improvement in symptoms, but two later scopes and biopsies showed biopsies improving and the last one was clear, showing no signs of coeliacs, so clearly gluten free diet working for that, but no relief with any symptoms.  I truly believe that what ever is going on with her is nothing to do with coeliac disease!  She has accepted that not sticking to her gluten free diet could make things much worse and she does not want to risk this!we

 

Inflammation seen on CT scan and barium meal (which didn't move passed her stomach).

 

Change of hospitals and gastro teams.  Still at a loss as to what is going on with her!  They think bowel dysmotility due to IBS.  They cannot rule out IBD as it is often really hard to diagnose, however I do not believe that if she had IBS she would be this sick and have rectal bleeding!

 

Her x-rays always show chronic constipation, which would explain the severe vomiting. 

 

nvsmom - oddly at her last appointment they said that one of her tyroid tests had come back low.  She has had this re-tested this week!  Have not got results back yet. 

 

Also her B12 was really low back in February causing really bad numbness and pins and needles.   She had 5 doses of B12 jabs, over 2 weeks, which settled symptoms down, she has been retested for B12 this week to.

 

Thank you all  for your replies and suggestions!

[turningleaf]

Thyroid is critical.  It acts as a regulator for so many things in the body including constipation, body temperature, etc.  B12 is also critical and it seems different doctors have different views.  On my labs, the normal B12 range is 200- 1400...this is a huge range.  I asked my first family physician to give me B12 when my labs came back at 200 on the nose.  (This was 2 years before my celiac diagnosis and I already been diagnosed as anemic for quite a while).  She refused to give me injections.  Within a few months, I started having migraines.  I changed family physicians and complained of my headaches.  He sent me to a neurologist...first thing he did was look at my bloodwork and say that he thinks he can help just be raising my B12 level.  Sure enough my migraines stopped.  The continued to look at my blood work over time and continued to increase the frequency of my shots...eventually we reached a diagnosis of celiac.  I have been gluten free for about 3 months and continue to take B12 injections weekly. 

Best wishes for you and your daughter.  I hope you get answers very soon.

[jepacar]

Thanks mommy2krj.  Basically they are saying they don't know!  Initially steroids worked, so possibly Inflammatory Bowel Disease. In March though her MRE scan was clear.  She had however been on steroids for 6 months on and off.

 

My gut instinct is that it isn't just coeliacs.  Her diagnosis right now (which changes with the wind)!  is Coeliacs Disease.  Small Bowel Dysmotility and IBS. 

 

Her main symptoms have been severe vomiting and abdo pain.  Her vomiting has eased at the moment, but she is still sick everyday.  Her pain is so severe she passes out.  She initially started with bloody mucousy loose stools, that turned into chronic constipation, but she again has dark purple bleeding.

 

Can dairy cause these problems? 

I'd definitely go dairy free, Celiac people are usually sensitive to dairy too, I didn't know until going gluten/dairy/process food free and my daughter got a little piece of cheese; next thing I know she was screaming of pain...Now I'm just about to go for a doctor app. because she is has had diarrhea and stomachache for the last 3 weeks and I don't know where the cross contamination or the problem comes from, doctors haven't being very helpful to us, but I just want to check if she got any infection. I read your story and my heart hug yours, my daughter's symptoms are not as severe as your daughter and I cannot even sleep of worries!!! I don't know what else to say for now...

[Niks]

Turningleaf - thank you!  Her B12 was 67 earlier in the year.  I hope it hasn't dropped so much again!

 

Jepacar - If it was me, I think I would too.  Unfortunately because the gluten free diet has done nothing for her symptoms, she is not wanting to even try dairy free ..  Her GI has pretty much told her it wouldn't be dairy or any other food intolerance!  I have no idea what he basis this on as she has never had any other food allergy tests.  I hope your daughter is feeling better!  xxx

[GottaSki]

Turningleaf - thank you!  Her B12 was 67 earlier in the year.  I hope it hasn't dropped so much again!

 

Jepacar - If it was me, I think I would too.  Unfortunately because the gluten free diet has done nothing for her symptoms, she is not wanting to even try dairy free ..  Her GI has pretty much told her it wouldn't be dairy or any other food intolerance!  I have no idea what he basis this on as she has never had any other food allergy tests.  I hope your daughter is feeling better!  xxx

 

Thanks for the longer history.  

 

Her extremely low B12 at three months gluten free indicates she was not yet absorbing nutrients.   The low Adrenal and Thyroid numbers also indicate that her system had not begun functioning normally.

 

I disagree with the GI telling her it could not be another intolerance.  Many with Celiac Disease have to remove other items until their digestive systems heal completely.  The first months gluten free are often filled with replacement grains and processed gluten-free items that are tough on a sensitive system.  Let me be clear...I am not saying it is another intolerance...just that it could be.  As for dairy...it is wise to remove this as the enzyme necessary to digest dairy is produced in the small intestine -- many remove it for 6 months to a year and get it back.  Processed foods would be the other first choice.  Simple whole foods and a food/symptom log can provide helpful information.

 

Considering there has not been the desired improvement ruling out other intolerances and getting her nutrient/hormone levels up would be a good route.

[nvsmom]

Be careful of docs with thyroid test results. The normal range is REALLY wide and many don't feel well even when their doctors tell them that they are fine. My thyroid started under functioning when I was a few years older than your daughter but doctors kept telling me I was normal. I was close to 40 before my labs were abnormal enough for them to agree.

Good luck!

[GottaSki]

Be careful of docs with thyroid test results. The normal range is REALLY wide and many don't feel well even when their doctors tell them that they are fine. My thyroid started under functioning when I was a few years older than your daughter but doctors kept telling me I was normal. I was close to 40 before my labs were abnormal enough for them to agree.

Good luck!

 

Really great point.  All of my hormone levels were very low -- with the exception of TSH...which was "normal" but far too high for me.  Now that everything has started functioning a bit better...all my hormones that were close to nil are rising and my TSH has decreased...I think I am finally close to appropriate levels for me.

[tommysmommy]

Hey, sounds like a rough time, but atleast you've seen some improvement. It can take some time. For my 6yr old, eliminating dairy was the key to success. He felt a million times better when he went gluten-free (and it was his little brother who was diagnosed first after a terrible bout of vomiting, diarrhea & weightloss). Anyway, my son was hospitalized for something that looked like an appendicitis (but wasnt) doctors said he had severe inflammation internally & said it must have been viral. When he didn't get better, I cut dairy & he got better! Its a challenge & unfortunately setbacks happen. I suggest giving dairy free a try, it can't hurt & might work. Good luck

[stanleymonkey]

Lower left quadrant pain and rectal bleeding and having er appendix out? That sounds exactly like my husband when he was 15 he was eventually diagnosed with crohns. The doctor might not be sr off the mark with I B D

[Niks]

Thank you!

 

I think as she is bleeding and still fainting she needs to at least try!  Now to convince her! 

 

Her new medication is actually getting her bowels moving which is better and has decreased the amount of time she is vomiting.  My take on it is, if her bowels aren't moving things through then it has to come out somewhere, hence her persistent vomiting.  This medication ( Prucalopride)  has some great trial results, so seems to be working for her.   Just need to sort the rest out!

 

Her pain is still high though.  This has all been going on for more than a year.  Poor girl .

[AlwaysLearning]

I have problems with abdominal pain that definitely responds well to B12. And it is worse on the lower left side though is pretty much all over. My levels aren't as low as your daughters and I've never experienced the extremes you describe but at their worst, some constipation was in the mix as well.

If you just research B12 deficiencies, you won't find much information that links it to abdominal pain, but if you google B12 deficiencies AND abdominal pain or IBS, you'll get a whole different set of links.

I have only been taking B12 supplements orally and they do seem to wear off pretty quickly, though their effects are immediate. After weeks of cramping and what I thought was severe pain (though probably nothing compared to your daughter), after taking one B12 supplement along with a glass of orange juice (mixed with strawberry/banana), I had positive results within minutes. A wave of pleasureable sensations actually flowed through my digestive system and the pain just magically disappeared. Although I took two more of them throughout the day, and two the next day, the following day some of the pain had returned again, and went away after I took another supplement.

My B12 deficiency was tested at 227 which is actually within the normal range, but low enough that the gastroenterologist was concerned ... and for me to have problems. Oh, and I've never been a vegetarian so I do blame malabsorption.

And though I'm considering going back and asking to get a shot in order to get an initial boost of B12 rather than piddling around with daily doses that aren't enough, I keep reading about those who rely only on shots and seem to have to keep going back because it just wears off again, and who would want to experience symptoms that are so painful in a continuing cycle like that?

I have been using Country Life Superior B12 which is 3000 mcg tablet and gluten free. You let it dissolve in your mouth a little before swallowing it and though a little tart, dissolves quickly, tastes pretty good, and definitely has some effect so may it be an easy option for a child.

I've read about B12 patches that can also be used daily, but they contain synthetic B12 which doesn't sound good to me. And your doctor could also prescribe B12 as a nasal spray.

If I'm having what I thought were severe problems with a level of 227, I can't even start to imagine how awful a person would feel if their levels were at 67!

[Niks]

^{Lower left quadrant pain and rectal bleeding and having er appendix out? That sounds exactly like my husband when he was 15 he was eventually diagnosed with crohns. The doctor might not be sr off the mark with I B D}

 

^{Thanks Stanleymonkey.  This is my gut instinct.  Crohn's makes more sense to me!} 

 

^{AlwaysLearning -  Thank you for all this too!  I am keen to see what is going on with her B12 and her Thyroid levels.  I am wondering if she should add B12 supplements.} 

 

^{Thank you everyone for your advice!} 

[stanleymonkey]

What was she like as a toddler we are starting to suspect my 2 yr old has crohns but my MIL is 75 so can't remember what my husband was like at that age.

[AlwaysLearning]

Post removed. I misread something.

[Niks]

What was she like as a toddler we are starting to suspect my 2 yr old has crohns but my MIL is 75 so can't remember what my husband was like at that age.

 

She was fine absolutely no problems Stanleymonkey!  It all started at 15 years.  Really hope you have a good GI to investigate for you. 

 

We haven't had the best day.  She woke up around 4am in agony.  By 10am even worse.  GP sent her to A&E.  Obs and blood tests all fine.  (Still haven't had tyroid and B12 back as taken at our local hospital!!)

 

By around 4pm it had eased off and now bearable.  Once she finally saw Gastro she was feeling much better!  He thinks that because her bowels haven't been working for over 6 months, that now with the new medication, the pain is everything starting working again.  Has a'dvised soft food, soups, smoothies and juicing! 

 

Asked about dairy again.  He doesn't think it's that at all! 

 

He wanted to keep her in again, but she's had enough of hospitals and as her pain was easier she wouldn't.  GRRRRRR