Hi Im New And Need Your Help...

[Loobiej]

Hi All, this is my first post and came across this forum last night when trying to find more info out and thought it would be a great idea if i joined.

My mum has coeliac disease and Chrones disease she was diagnosed with Coeliac in her teens and Chrones in her late twentys.

Basically my daughter whos now 7 hasnt been too well,below is a list of symptons and what tests have been done so far.

First visit to docs to discuss her going to the toliet alot, stool samples done for parasites = negative

Shes had a vaginal infection and went on to antibiotics we suspect this was caused by her wiping her bum from doing so many stools or excezma in her vagina.

She goes to the toilet and has loose stools 3-5 times a day.

Shes very pale and suffers with excezma she has creams for these its only really become a problem since this all started. Shes had swollen lymph nodes at the back of her neck where her excezma is on a few occasions.

She complains of stomach ache but only when she needs to go, she gets constipation every now and then.

She suffers from mouth ulcers and around her lips gets very sore and red every few weeks.

She can be very irritable, lathargic, and moody.

she has woken a few times during the night to go to the toilet, she complains also of her legs hurting during the night but im not sure if this is just growing pains.

She was sent home from school a few weeks ago for been violently sick abut seemed ok in herself just irritable.

She is on the 8th centile for her weight and 75th for her height.

we were referred to a paediatrician last month they took blood tests and all came back fine,they also did some stool samples and have been told over the phone on Thursday that they seems to be an issue for her to digest carbohydrates and proteins im not sure how this is picked up in her stools, the results also show inflamation of her gut, he is going to put it all in writing but after looking at these results and history he suggested putting her on a gluten free diet for 3 months. Im still trying to get my head around it and hope when i get the letter it will make more sense. What do you guys think will it just be an intolerance or coeliac? id kind of suspected it was coeliac but its kind of thrown me them detecting something with carbs and proteins and inflamation does this happen with coeliac?

Jessica as a baby was breast fed but as soon as she went on to baby milk was very sick and as seemed fine until this last year.

Shes always been small she weighed 6lb at birth shes now nearly 8 and weighs 3stone.

Any help or advice would be much appreciated.

Thank you xx

[Loobiej]

Hi

I just wanted to add that Jessica as started to have quite bad headaches too

[mushroom]

Hi, Loobiej, and welcome to the forum.

It is worrying when your daughter is not well and you get a rather nebulous-sounding diagnosis. Nevertheless, the symptoms of celiac disease/gluten intolerance can be rather nebulous and not at all clear cut.

If your doctor suspects celiac/gluten intolerance and wants her to try the gluten free diet then that is what I would do. If that is her problem you may see a difference right away or it may take a few weeks. Headaches and joint pain, and mouth sores, in addition to GI symptoms, can be indicative of an intolerance to gluten. And incidentally, celiac disease is just one example of a gluten intolerance. It happens to be the example the medical profession knows how to test for, but the non-celiac gluten intolerances can be just as troublesome as celiac disease.

If Jessica has any damage done to her small intestine by the gluten she may not be able to digest millk, cream, or ice cream properly either, and I would keep her off these products also when you take her gluten free. There is rice, hemp and almond milk available, as well as ice creams, or you might try Lactaid milk and/or tablets which provides the enzyme that will digest the milk

Good luck and I hope the diet works for Jessica. Let us know how she is doing.

[Loobiej]

Hi and Thank you for your reply mushroom.

Below is is what is in the letter i recieved today from her consultant.

Jessicas stools shows some glucose in it it which suggests possibly some carbohydrate malabsorption in her tummy. This can be found sometimes when the gut cannot absorb carbohydrate as it should due to inflamation or lack of special proteins in the gut called enzymes that help food digestion.

I think it would be useful to have a trial of wheat/gluten products over the next few months.

He then finishes saying he has written to dietician to support this and if there is no change in jessica after this more tests will be required.

What are you thought on this?

Is Carbohydrate malabsorption linked with coeliac ?

[mushroom]

Celiac/gluten intolerance leads to malabsorption of of food, period. Digestion is a complicated process, but one of the consequences of gluten intolerance (besides inflammation and a condition called leaky gut syndrome) is often a poorly functioning pancreas which makes the enzymes (there are enzymes for proteins, fats, carbohydrates, etc) we use to break down our food. This will often lead to undigested food pieces passing in the stool - could be carrot, spinach, meat, whatever.

I would question if the doctor has done the blood tests for celiac (coeliac ) disease. This should be the first step, before putting her on a gluten free diet, because you cannot give these tests to someone not eating gluten. The tests rely on detection of antibodies to gluten, and if Jessica is not eating any gluten there will not be enough antibodies to give a reliable test result. She would then have to go back on gluten for 2-3 months to get tested, and what often happens after you have been gluten free (and you are intolerant) is that eating gluten presents much worse symptoms than previously and it really is a form of torture to make a gluten intolerant person do this. It can make them really sick. So I would ask him to perform the celiac blood panel now, and then, regardless of the results (positive or negative) do the gluten free trial for three months.

[Loobiej]

Hi again

Thank you for taking the time time to repy your really helping me.

Jessica did have blood tests in September and he said the good news was that they were all ok, however this test isnt 100% accurate for celiac and was waiting for her stool tests, now hes suggested the gluten/wheat diet.

Does that seem right to you?

[mushroom]

I think your doctor is taking a very measured approach; it sounds like he knows more about celiac and gluten than most physicians and yes, I would follow his advice. The best test of all is a positive response to the diet. In my book this trumps all other testing.

[Loobiej]

Thats good to know,thanks again, we will be following his advice and will let you know and keep you updated once we have seen the diestician.

Thank you for all your help x

[Loobiej]

Hi ALL

I am just updating on how things are going with Jessica. So far we have had blood tests that came back negative, Jessica had a few rough weeks early this month and she was very sick in school and we noticed slight streaks of blood in her stools, and when she wiped. I spoke with consultant and he wanted her to have an xray, when she has a bad week her excezma flares up she gets very sore around her lips and ulcers. The dr wanted to check they were no blockage etc and the result showed everything was ok. She had slight blood streaks in her stools again last week but we are putting this down to her going to the toilet alot and her stools been very loose. The next step after the blood test result been negative was to try a wheat/gluten free diet so we were referred to a dietitian, thankfully we got a cancellation and saw the dietician last week she suggested a wheat free diet first rather than going straight onto gluten free, so we are doing this for about 10 weeks, my concern is looking at most things in supermarkets if there wheat free most of them are gluten free? ie:most bread to make her a sandwich, i phoned the dietician yesterday and explained this and said i was slightly confused as shes going to be wheat free but also much lower gluten intake she said that she will still have an intake of gluten as it is in alot other foods,we only started the diet on monday and the amount shes going to the toilet has reduced to less than half, im not sure if this can happen so quickly, her other symptons such as mood swings and sore lips havent settled infact theyve probably increased. The dietician has told me the consultant will probably put her back on wheat and gluten before carrying any further tests but he wants to see how she reacts to diet first, my concern is shes more a less wheat and gluten free or has a much lower gluten intake how am i going to tell whats maybe causing the problem? any help is much appreciated. Thank you x

[rosetapper23]

Wow, you're being put through the wringer on this! It sounds to me that neither the doctor nor the dietitian is an expert in gluten sensitivity or celiac disease. I also question whether the eczema your daughter has is actually eczema--it might be Dermatitis Herpetiformis, which ONLY exists in celiacs. If you can get a dermatologist who is experienced in biopsying DH, you'll have your answer with regard to celiac. The vast majority of dermatologists do NOT know how to biopsy correcting for DH--they end up biopsying a lesion, and that gives a negative result. The dermatologist needs to biopsy clear skin that is adjacent to a lesion to get a positive reading for DH.

I suspect that your daughter may be reacting to both gluten and dairy. I disagree with your dietitian's recommendation to remove only wheat. Your daughter sounds very ill, and even though I'm not a dietitian, it makes more sense to me to remove all gluten and dairy from her diet and observe her to see if she improves. If so, then reintroduce dairy first. If she tolerates it, then add gluten back in. If she tolerates that, then she probably has a wheat allergy. If she can't tolerate reintroduction of gluten, then you know that she either has celiac or gluten sensitivity. I don't know why the dietitian is going about this whole thing backwards, and I'm concerned that your daughter's health will worsen under her advice.

Lastly, is the doctor certain that she doesn't have Crohn's Disease? With a family history, that might be the cause.

[Loobiej]

Hi

Thank you for your reply, my husband words were exactly the same as yours and we seem to be taking the backwards approach.

They did blood test and they said these were all fine and shes had an xray and this didnt show any blockage, im not sure if this would show Chrons or celiac. I have started another Post after this - Topic : Update on Jessica... and i have had quite a few responses and your all saying the same.

I have called the consultant today and am waiting his call back.

Thanks for your reply.