How Much Time Does It Take To See An Improvement?

[mrsgwill]

Hi

My daughter has had Positive Endomysial Antibody And Normal Biopsy results which is apparently fairly uncommon so the medical advice has been to return to a normal diet (I have had some great advice from the pre-celiac board) BUT i was just wondering from parents who have children with celiac disease about the symptoms that present to them as my daughter is only 5yr and cant really describe how she feels apart from 'i feel poorly all the time'

Before the biopsy we had a positive endomysial antibody result and obviously had to keep her on a 'normal' diet until the biopsy - the biopsy has returned normal results with slight cell damage BUT the blood test taken that day returned another positive endomysial antibody result. The consultant has suggested we stay on a 'normal' diet for 12 months and then redo blood tests with possibly another biopsy

MY Questions to you Celiac Parents are about how quick the benefit of a gluten free diet show themselves and how quickly they return once a 'normal diet' is started again

My daughter had few symptoms in the scheme of some celiacs and was diagnosed by accident (by testing for a range of other allergies etc). On the two weeks between the biospy and the results we started gluten free diet, she seemed brighter, with more energy, her face had more colour, her eyes less dark, less mucousy / snotty, her bowel movements less smelly and possibly less urgent.... BUT we were on holiday for the first week so was this why she was appearing more lively....

We have now been back on a gluten contained diet for a week, her eyes look sunken, she is more snotty, she is more tearful, she has fowl smelling stools, her energy levels are lower

CAN the mild symptoms of her celiac disease present themselves and improve over such a short period of time?

I have agreed (and I am really not happy BUT - i cant go against medical advice) to keep her on a gluten contained diet for 6 months - retest her blood and if still positive put her on a gluten free diet for 6 months and retest bloods again - in theory this should show not antibodies if we are doing it properly

AM I GOING IN THE RIGHT DIRECTION? - i feel quite desperate

Thank you in advance for reading my ramblings and am grateful for any advice

[Dixiebell]

It is possible she doesn't have enough damage in her intestines, yet. But to me it sounds like you already have an answer with her feeling better. The blood test were positive and she is responding to the gluten-free diet and gluten challange. I think the time it takes is different for everyone. I saw improvement in my son after about three weeks, his tests were negative. Sadly some doctors need to see a lot of damage to diagnose celiac. I don't think I could put my son through that just to satisfy his Dr.

[weluvgators]

Hugs, Mama! It can be difficult to sort through this gluten mess. Yes, you absolutely may have witnessed your daughter's improved health because of gluten elimination. I would know very quickly that gluten made our children sick, and it was so obvious when they had more good days than bad that the gluten was causative of the illness and low level sickness (chronic cold, snotty, chronic cough, general malaise) issues that we were having.

I am sorry that you feel so desperate, and I can really relate - I feel that way more often than I want to at times. IME it is difficult to find quality medical care for these issues, especially if you struggle to make your child definably ill enough for the damage to be widely visible and apparent to more people. It is a strange position to be in for sure!

But you are a customer when it comes to seeking medical advice. You have hired a medical professional to help you understand your daughter's healthcare options. You are free to make your own decisions. You are paying him for his expertise that he has agreed to share with you. You can always go get a second opinion, and that is commonly recommended for critical healthcare matters. Do your research and decide what is best for your child and your family. Your doctor cannot consider all of the variables that your family will live through.

My daughter suffered permanent damage from her early "incidental" gluten exposure. I wish I had understood even sooner that I needed to get the gluten out of our lives. But I am also happy that it has worked out as well as it has for us. I just wish I would have tried the gluten elimination sooner and done a better job of it from the beginning. Medical providers were pretty useless in figuring out *any* of that.

As for helping her describe *what* is bothering her, you may want to get a body poster. We use the poster to help communicate which part hurts, and it has been very helpful as they learn these communication skills. But, I have a difficult time articulating at times what it is that gluten is doing to me, so I imagine that it may be very difficult for a child to articulate how she feels badly - especially if it is "normal" for her.

[kerrig]

Our 10year old son tested positive with blood work - we took him off Gluten that minute - I noticed an improvement within a week - now he has been Gluten Free for 2 months and he is a completely different child. We elected to not have the biopsy since his blood results were so high ( over 200 ) and when we saw the GI he said that he would refer us to the celiac clinic even if we decided not to do the biopsy. My son knows that he is feeling better and so he is prepared to eliminate the Gluten even without the "gold standard" diagnosis.

I cannot believe the difference in my son - his taste buds seemed to have opened up too and he is now eager to try new foods where before he would not stray for his very limited diet - I realize now that this was probably because he associated food with not feeling well but was doing that without even been aware that he was!

You should see a difference in the behaviour / energy level quite away but I would say that the bowel takes longer to heal and that would be about 3 weeks before there was a consistent improvement.

[Skylark]

Damn doctors. She is celiac and you're getting spectacularly bad medical advice. "Slight cell damage" is not a normal biopsy in someone with anti-EMA.

Please read these studies on anti-EMA and take them to your doctor. Basically people with anti-EMA almost always go on to develop worse damage. One of these studies was even in kids.

Open Original Shared Link

Open Original Shared Link

Basically, your doctors are asking you to damage your child with gluten to the point where she has full-on sprue, malabsorption, and is not getting good nutrition in a critical developmental stage of her childhood in order to "prove" she has celiac. If this is starting to make no sense to you, you are absolutely right.

Yes, symptoms can resolve very fast on the gluten-free diet. It took only a week for my own misdiagnosed IBS and stomachaches to go away on a lamb/rice/salad diet. I get symptoms within six hours of consuming even a little gluten.

[mrsgwill]

Thank you so much for you comments, they are all reassuring... I really believe 'you know what is best for your child'

dixiebell - my gut instinct is that she is better when gluten free

weluvgators - I will get a body chart - she actually said today that her tummy hurt - usually she says that she hurts all over...

kerrig - you have really reassured me that energy levels is a key factor - we have always called my daughter a 'greyhound' bursts of activity with frequent rests and thumb sucking

Does anyone know if celiac disease is mucous causing ie - nasally speak and runny noses

THANKS AGAIN

[Skylark]

Runny nose and congestion is usually caused by a true allergy rather than celiac. It is possible to have wheat allergy along with the celiac disease. I seem to have my childhood wheat allergy back these days, probably from losing my natural desensitization on the gluten-free diet. Last time I got into a little gluten, I woke up in the morning sniffling, sneezing, and a little asthmatic.

The other thing that's notorious for mucous is dairy. A lot of people with celiac have some cross-sensitivity to dairy. Sometimes it's only until they heal and the antibodies go away. Once she's been gluten-free for a bit, if things don't sort themselves out you might try dairy-free. I wouldn't do that unless she isn't a lot better gluten-free since there is so much good calcium in milk and dairy.

By the way, you mentioned retesting after six months gluten-free. You should absolutely follow through with that. She got positive anti-EMA twice, and they should fall to normal levels on the gluten-free diet.

[mrsgwill]

Thanks Skylark - we only found out about the gluten issue because of allergy testing and her results for dairy allergy were negative (her brother is diagnosed with egg and dairy allergies so fully expected this to be positive) I know allergy tests arent necessarily accurate and intollerances cant be tested for. We live very dairy free anyway - rice milk, soy yoghurts, olive oil spreads etc. I have tried my daughter on lactase free soft cheese but i am pretty sure she gets diarrhoea from that so i am hoping she will become more tolerant if and when we get her gluten issues sorted out.

By the way, you mentioned retesting after six months gluten-free. You should absolutely follow through with that. She got positive anti-EMA twice, and they should fall to normal levels on the gluten-free diet.

you mentioned the above, so why didnt the 'professionals' do this? it seems such a logical way forward.

I think i am torn because i dont want to be the one that diagnosis her (of course I dont want her to have celiac disease) but i feel that if i dont follow medical, the decision to put a child on a gluten free diet is very serious and life changing.

agrrr

[Skylark]

I think i am torn because i dont want to be the one that diagnosis her (of course I dont want her to have celiac disease) but i feel that if i dont follow medical, the decision to put a child on a gluten free diet is very serious and life changing.

agrrr

First of all, the papers I linked are part of the peer reviewed literature and written by one of the world's best celiac researchers. Your doctors should take them into consideration. If you have access to a medical library (perhaps at a local university) it would be good to bring them the full articles. Also, remember that you can seek a second opinion. It sounds to me like you need a doctor with more expertise in childhood celiac disease. Some doctors are more cavalier than others about gluten challenge, and I don't think gluten challenge is actually something to be taken lightly.

[twohokies]

Thanks Skylark - we only found out about the gluten issue because of allergy testing and her results for dairy allergy were negative (her brother is diagnosed with egg and dairy allergies so fully expected this to be positive) I know allergy tests arent necessarily accurate and intollerances cant be tested for. We live very dairy free anyway - rice milk, soy yoghurts, olive oil spreads etc. I have tried my daughter on lactase free soft cheese but i am pretty sure she gets diarrhoea from that so i am hoping she will become more tolerant if and when we get her gluten issues sorted out.

Jumping in here on the dairy discussion. From my experience, a dairy intolerence can produce extra mucous all throughout the body. We were taking my son off of dairy for his autism/SPD diet and when doing my research, I stumbled across the effects dairy can have on the body. My 5yo had pneumonia 4 times in one 6-month period and had loose, smelly, no notice bowel movements 5-6 times a day. We did a food allergy panel and celiac, she tested negative. But we pulled her off dairy anyways and she's improved SO much in the past 14 months. My 3yo had the same issues with her bowels along with stomach pains, we tried removing dairy and that wasn't the answer for her..............gluten was; so she's now back on dairy, off of gluten and she is no longer in pain.

Sounds like you probably need to go gluten-free, then if things continue, go CF. Keep in mind that with lots of kids with casein issues, they also have soy issues too. Good luck!