Teen Daughter With Gut Issues

[Ada-B]

Hello everyone,

my teenage daughter is 16yo. Ever since she was a baby she's had bowel problems - gas and diarrhea, GERD, projectile vomiting and failure-to-thrive. Her first year of life was constant screaming and little sleep for any of us.

She was weaned onto solids at 3 months (we were told it would stop the screaming - it didn't). At 9 months old I stopped breastfeeding and gave her cow's milk. Oh dear. It came out both ends and she screamed herself hoarse. Shortly afterwards, she were told she was "probably" lactose intolerant and put her onto soy formula. She wasn't as bad, but she still grew slowly, was difficult to feed and miserable.

We kept trying with solids, but she hated food. It got harder and harder to feed her and she started losing weight, so by 20 months old she was diagnosed as a food-refuser and we were sent to a feeding clinic. We got a lot of help from the clinic and they confirmed that my daughter had become scared of food due to the intolerance issue.

My daughter continued being a skinny, food refuser (albeit not so bad as we tried to ignore it and make mealtimes fun) but did start to grow in height and develop normally. However, she regularly complained of tummy pain, never had normal stools and suffered a bloated tummy a lot.

Fast forward to recently. She's doing her exams this year and is quite stressed. For the last two years her tummy pain has been constant and is getting her down. We went to the doctors but all they said was that she was still lactose intolerant and to avoid dairy products at all costs, which we've been doing for years anyway. I requested a celiac test but the doctor practically laughed at me and said it was totally unnecessary.

After that reception, we didn't go back, and have since changed GPs. But my daughter's pain and bloating have been getting so bad we thought we'd try the new doctor. As well as diarrhea, wind, bloating, reflux, cramps and vomiting easily, my daughter had also passed blood. The new GP listened to this history and said celiac was really likely, and did the blood tests (tested her for loads, in fact). Today we got the results: negative, across the board. My daughter is apparently healthy, only with some unusual IBS.

We're not sure what to do. I've hit the Net and looked up "false-negatives for celiacs" and found a lot of hits. But the GP said it was rare to have false negatives and felt that my daughter's lack of anaemia and other symptoms was a sign that it was a functional disorder, not auto-immune. I want to believe her, but... I can't find anything about children with symptoms like my daughters, who didn't have celiacs. So either my daughter's unique, or something funny is going on.

Our GP recommended trying a wheat-free diet, but if that helps, surely it would mean that any further celiac tests would be negative automatically? Regardless of whether my daughter had developed celiac or not? I really don't know which way to turn now. We thought we had the answer and much as I don't want my daughter to have celiacs, I also don't want a constantly sick and depressed teenager on my hands, who feels too unwell to enjoy life.

[Marlie]

I presume the doctor tested for Total IgA, DGP IgA, DGP IgG, EMA Iga,,and tGG IgA that all came out negative. Some celiacs test negative but have a positive biopsy. There is also Gluten Intolerance whereby people have the same symptoms of Celiac. Did they check for any vitamin deficiencies like B12, Vitamin D, Folic Acid? Most doctors never check for vitamin deficiencies.

If your daughter goes Gluten Free it will effect the testing for Celiac Disease down the road and she would have to go on a challenge diet before being retested.

Not all Celiacs have anemia. There are many Celiacs who have no symptoms whatsoever. The range and severity of symptoms is all over the map. There are people who have only one positive blood test to all positive blood tests to all negative blood tests who do have Celiac Disease.

[Ada-B]

Hi Marlie,

thanks for that. I have to ask about Total IgA etc. I'm not convinced they did all those tests - they just said "The celiac test". We have been referred to a gastroenterologist but we might have a long wait to see him/her. Problem is, she's 16, so around here that means she is almost treated as an adult and they won't give me her results - she has to request them (and she's really shy).

Her B12 was tested and fine. They also tested vitamin D, calcium, iron, thyroid function, diabetes, ESR, ANA and other inflammatory markers (checking for ulcerative colitis). One of the other doctors thought our GP went over the top, but I'm glad that was all checked-for.

We had pizza yesterday (dairy-free) and this morning my daughter has been really bad. I feel guilty sending her to school.

We have an appointment to see the GP again on the 25th (3 weeks time) so I'm now in a dilemma of whether to try gluten-free in the meantime.

[mushroom]

The total serum IGA test is really a validation test - if she has normal levels of serum IGA then it makes the other tests more likely to be accurate. If her total serum IGA is low than all the IGA testing is invalidated. The DGP tests (Deamidated Gliadin Peptide) is a newer test and is considered to be more specific for celiac. Some doctors do not know of it and some, even if they do know of it, still don't order it because it's "new".

Your GP is wrong about the false negatives - there is about a 20% false negative rate on blood tests and on endoscopy with biopsy too (which I am sure he is not planning on doing if her blood test was negative)

Your daughter does not have to go in to request the copies of her results in person if she is really shy. She can just mail a request for copies of her records to the doctor's office, to be mailed to her. Make sure the request is signed and dated and specific instructions are given as to where to mail them. The request should include in the wording "copies of all laboratory testing results, to include all blood tests." And ask for anything else you specifically want too.

I would not take your daughter gluten free while there is still a chance of getting a diagnosis, i.e., you are sure all her blood work was correct and complete. Some doctors in dealing with symptoms of such longevity and severity would want to do an endoscopy but it doesn't sound like your doctor belongs to this school. Nevertheless there is still a chance you could get one done. I'm glad you are getting a GI referral because it sounds like she needs specialist knowledge and the GI would order the endoscopy. If she does stop eating gluten it would be pointless to do any further testing by the GI so she does need to stay on it for the appointment. Is there anything that can be done to speed it up??

I am glad all her nutrient tests came out normal; that is quite amazing under the circumstances. I don't think that testing was over the top at all. I just don't know why it wasn't done sooner

I am sorry this post has jumped around so much - my thoughts are a bit jumbled tonight. One thing to keep in mind, as one of the other posters mentioned, is that it is becoming recognized that celiac disease is only one form of gluten intolerance (and the only form that is currently able to be tested for). More and more doctors are recognizing non-celiac gluten intolelrance and if she has this none of the tests will be positive. So after you have completed all testing that either can be done or you want to be done, be sure to put her on a three-month strict trial of the gluten free diet.

[Marlie]

I would fill out the forms for your daughter to get her labs and have her sign it and then deliver it to the doctor. When you see your doctor ask to see the labs. If he hasn't done a whole panel which a number of doctors don't ask him to. I would wait on the gluten free business until you at least get a hold of the results. If it seems like they won't do an endoscopy or you don't want to go through with it then I'd try gluten free. An endoscopy may still come up negative but the culprit still remain the gluten. You are lucky to have a GP that ran all those tests. Its definitely not over the top. More doctors should. I had to request the tests even after diagnosis. We haven't checked everything but a vitamin D deficiency was found. I wish we'd checked Niacin because I suspect that. Do you have any tick born illnesses where you live. You might want to check that too.

Four months prior to my daughter's diagnosis, it was evident that she became ill every time she had pizza. I suspect now that it was the quantity of Gluten that made it noticeable.

[mommida]

Your daughter will most likely have to have an endoscopy with biopsy. I would ask the doctor for a list of what he/she feels the endoscopy is being done to diagnose. I would also make sure the GI is aware of eosinophilic gastro. disorders and this testing is being done.

Gluten should not be removed from her diet while testing is being done. (It can be a "trigger" for Eosinophilic disorders too!)

[Ada-B]

Thanks for your help everyone.

The situation escalated last night, with my daughter unable to sleep due to tummy pain and needing the bathroom. We went to the emergency doctor's and saw the same one from the other day. We confirmed that all the tests were done (Total IgA etc) and also that the IBS medication wasn't working at all.

We're seeing the gastroenterologist in a couple of weeks (I thought it would take ages) and we're under strict instructions not to change her diet at all in the meantime. Our GP feels this looks more like Crohns than anything else, which is worrying to me as that is such a nasty illness, but until we've had further tests we can't be sure it's not some kind of atypical celiacs. They want to do a colonoscopy, endoscopy and various other tests. I just hope we finally figure out what is wrong with her.

I also went up the school and took the doctor's letter so they can write on her record that she is genuinely sick - she was panicking because they can't attend Prom without 95% attendance, but we've been assured that only applies to kids who skip school, not kids who are ill. They've also given her a "medical excuse pass", which means she can go to the bathroom whenever she needs to, without having to give the teacher a reason or ask permission.

I've sent my daughter to bed with codeine and a heat pad. We're hoping the codeine might calm her gut down a little.

This is a scary time for me as a parent - I'm trying to be brave but it's horrible to see your child suffer. I never thought I'd wish my child had celiacs

[mushroom]

Oh, I'm sorry she has had a flare-up, but glad you got answers to some questions. Also glad that the GI appointment is only a couple of weeks away. IF I were a GI I would certainly scope both ends too because her picture is a bit fuzzy. It is only by doing all the tests that you can find the problem. Some doctors give up way too easily and stick the IBS label on and move on to the next patient

It sounds like things will become a lot clearer in a couple of weeks. I know this is a scary time for you, but hang in there a bit longer and I hope you get some positive answers soon