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Negative Biopsy


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#1 LolaK

 
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Posted 26 February 2011 - 06:12 AM

Hi I'm new on here.
My 16 year old son has been ill for the last 2 years, mostly exhaustion and low immune system plus leg and back pains - loads of time off school and recently sore abdomen, bloating and gas. He had Glandular Fever 2 year sago and the GP thought it was post viral syndrome but tested him for coeliac and the blood test was positive. 1 month later he had the biopsy. In that month running up to it he was getting sicker and sicker, coming home from school and going straight to bed.
So the day of the biopsy, as soon as he was ready to eat we started a Gluten free diet. The change was immediate. Not just physical such as gaining some weight more energy but also he became a joy to be with again. He had been so moody and aggressive for the past few years he was so hard to live with.

And now as the title suggests we just received the result of a negative biopsy! I am really shocked as he responded so well and also had no time off school since being on the gluten-free diet (he's in the middles of important exams)
Being 16 I know he will not want to stick to the diet very carefully now he thinks he has got Coeliac disease. I feel so disillusioned with it all - I just want him to be well.

Any ideas what next? (He has an appointment next week with consultant at Barts Hospital).
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#2 zus888

 
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Posted 26 February 2011 - 10:43 AM

Did the transgultaminase tests come back positive? Just because they didn't find it doesn't mean it's not there. Plus, celiac is just one "symptom" of gluten intolerance. Celiac is just gluten intolerance with villous blunting or atrophy. If he has gluten intolerance, he still will have ALL the same risks in terms of his general health and well-being. If he tested positive for the antibody test, then his body has developed them because it thinks that gluten is not food and is attacking it. This causes a number of problems including chronic inflammation which leads to a whole host of other problems. My suggestion is to keep him on the gluten-free diet, and to do what you can to get him diagnosed with gluten-intolerance or celiac. Remember celiac is just ONE FORM of gluten intolerance, you could even consider it a symptom of it. And, as you know, not everyone gets the same symptoms. Ask questions regarding his diagnosis and the chances of the biopsy missing something. Ask questions about his blood test results (like, why would he have antibodies to gliadin or transglutaminase). Ask if they will diagnose him based on the diet (and maybe a challenge). If they won't, you should find another doc who is more familiar with celiac/gulten intolerance. The only reason why I suggest trying to get the diagnosis is because he is in school. The school will be required BY LAW to offer gluten-free lunches (if they don't already do that) if he needs it for his health. But I'm fairly sure that they will require a diagnosis before they go spending extra time and money to do it.

Good luck.

I'd also like to add that if you can get him completely gluten free (check his medications too), he might be willing to stick to the diet because of how good he feels and feeling the consequences of being glutened.
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Suzanna

#3 zus888

 
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Posted 26 February 2011 - 10:44 AM

I also want to say that I'm fairly new to this, so the others might have more to say. I am reading a book called "Healthier Without Wheat" and it has been extremely enlightening, and pretty much where I'm getting all my information from. I strongly suggest you read it.
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#4 etta694

 
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Posted 26 February 2011 - 01:32 PM

I have been fighting different symptoms for many years, doctors finding tests 'normal' for whatever they tested for. I finally found info online that pointed me towards gluten. I was scheduled for a colonoscopy, endoscopy, and biopsy (I asked about Celiac disorder). The results? Everything was wonderful, my intestines showed no disease whatsoever. Since cutting out gluten - any form of it, I have my life back. I feel great, I am not exhausted, I have great digestion, I am not bloated, sick, I don't have a chronic cough,etc. Test results don't always indicate the whole story.
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Anemia and IBS through my life
2005 Joint pain, exhaustion, general feeling of not being well 2006 Beginning of testing for everything but Celiac 2008 Bloating, more muscle stiffness, feeling sicker, more exhausted-testing 'normal' 2010 March insides begin to shut down, cough that won't go away 2010 June Colonoscopy, Endoscopy, biopsy - all show no problems
Self diagnosed gluten intolerant - went gluten free. Within 3 days feeling better.
After 5 days - insides began to move
Now - feel better than I have felt for 15 years (except when I gluten myself.. which I'm good at)

#5 LolaK

 
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Posted 27 February 2011 - 05:33 AM

zus888 and etta694, Thank you both for your responses. Both very helpful and informative.
I've been reading a few posts on here about diagnosis and it seems they should be taking tissue from multiple sites? Well it seems like they only took 3 samples from my son. Also He had one positive blood test and that was followed by a negative one that the consultant did. They noticed on the endoscopy that he had small patches of duodenitis - not sure of significance of that.

Well we are going to continue gluten free although my sons initial reaction to the negative biopsy was celebration I know he realises the effect that Gluten has on him. and we will see what the consultant says Thursday.

What is interesting is that he has always craved bread and similar products and even when he was a toddler he would over eat on bread and it always followed by screaming and colic.

I will update on Thurs.
Lola
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#6 ravenwoodglass

 
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Posted 27 February 2011 - 07:35 AM

The change was immediate. Not just physical such as gaining some weight more energy but also he became a joy to be with again. He had been so moody and aggressive for the past few years he was so hard to live with.

You are doing the right thing by keeping him gluten free. For some of us brain impact can occur before the gut damage becomes severe. Also damage can be patchy and if the right area is not biopsied you can end up with a false negative. The combination of positive blood work followed by the positive changes on the gluten-free diet is significant in showing the diet is what he needs.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#7 LolaK

 
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Posted 27 February 2011 - 04:29 PM

You are doing the right thing by keeping him gluten free. For some of us brain impact can occur before the gut damage becomes severe. Also damage can be patchy and if the right area is not biopsied you can end up with a false negative. The combination of positive blood work followed by the positive changes on the gluten-free diet is significant in showing the diet is what he needs.


Thank you Ravenwood, we will be doing our best to keep him gluten free, I will be interested to hear what consultant says on Thursday.

Does anyone know if the Duodenitis is significant? Is it normal for someone so young to have this?

Thanks Lola
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#8 eatmeat4good

 
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Posted 28 February 2011 - 12:21 AM

Lola,

My son is 16 also.
We didn't do testing, but he had been sleeping every moment not in school, had severe asthma and a stumbling gait and leg pain. Irritability and moodiness and depression.
It all cleared up in a few days gluten free and returned on gluten challenge.

I tried to get him to try gluten free a few weeks after I did. He gave me 4 days and I noticed a big difference. Then he ate pizza with friends. He was sick for 4 days and I mean bad. All the symptoms hit hard. I was kind of thankful for that because after that episode he is completely vigilant about gluten avoidance. He feels better without it.

Maybe your son is relieved that the bad symptoms went away when he didn't eat gluten.

Even without testing postive, he may decide to stay gluten free on his own. Especially if he has a reaction when he tries eating gluten again. You may have to have a few "episodes", but usually if gluten is a problem, the sensitivity increases.

That means you CAN'T got back to eating gluten even if you want to.

I hope your tests are definitive, but if they are not, I hope your son chooses gluten free for himself if he feels better that way. No one likes feeling tired and moody and depressed. So even if he goes back to gluten for a time, you can always help him by letting him know about his symptoms and reminding him how well he felt off of gluten. Gluten intolerance is just as serious as Celiac for the damage to the quality of life to the individual.

Does he notice how much better he feels and behaves off of gluten? Maybe that will be enough to keep him gluten free. I don't know about the duodenitis...but it certainly sounds suspicious of Celiac disease doesn't it?

I gave my son articles on Gluten Intolerance and Celiac. They helped him understand his symptoms and it was a relief to him to find out he can live normally now.
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#9 LolaK

 
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Posted 28 February 2011 - 02:09 PM

Thanks Eatmeat4good for sharing that with me, sounds like a similar picture in many ways. We live in the UK so with a positive biopsy you can get gluten free foods on prescription, which I was hoping for, but that's maybe not to be.

I was surprised at how well he has accepted the diet, but he did have a burger after the first week "just to see" and he felt rotten for about 3 hours afterwards with stomach pains and gas. He was in a terrible mood and picked a fight with his younger sister and everything dissolved into chaos and I realise that we have gone through so many scenes like this that could have been avoided had we known..

The next day he was feeling mostly better but tired and we talked about the effect it had had on him.
I will update after Thursday when he see the consultant but we are staying gluten-free.
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#10 ravenwoodglass

 
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Posted 28 February 2011 - 02:37 PM

Thank you Ravenwood, we will be doing our best to keep him gluten free, I will be interested to hear what consultant says on Thursday.

Does anyone know if the Duodenitis is significant? Is it normal for someone so young to have this?

Thanks Lola


Duodenitis means the duodenum is showing some inflammation. That is not unusual with celiac. From reading your last post it is good that he is seeing good results on the diet and his reaction to adding in that bit of gluten may help him realize how harmful it is to his body. I hope he is feeling better soon.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#11 LolaK

 
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Posted 03 March 2011 - 08:46 AM

Just thought I would update as we went to hospital for follow up. I thought it would be frustrating, but it was worse than that.

The registrar was different to last time. she started by saying "good news the biopsy was negative and so was the blood test" (they did a second test at the first appointment). she asked J how he was and he said that he had gone gluten-free as soon as he had biopsy done, that he was feeling better now, more energy, hadn't missed school and was putting on weight. He also said that when he had eaten bread or pastry had felt terrible in his stomach and aching had returned.
She looked incredulous and said that was great but he didn't have coeliac disease and they can't give him a diagnosis.
So I asked her why she thought he had improved and she said because some people don't react well to wheat or gluten. She said she would go and ask consultant if J could stay on the diet and maybe do a challenge at a later point. She came back and said "Dr L says he definitional does not have coeliac and that he should be discharged from his care. he can continue with diet if he wished but he isn't coeliac"
I told her that the last registrar had said that if the biopsy was negative they would look for other reasons why he was so ill. But she said because he is better there is no need and they don't do that anyway.

I have never come across such an illogical argument.

I realise that staying on the diet is the answer, but she was telling my son he doesn't have it and that seed is planted firmly in his mind now. It was a complete waste of time and I feel so mad!
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#12 ravenwoodglass

 
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Posted 03 March 2011 - 06:03 PM

It can be really frustrating. The good thing is that he has seen the improvement on the diet and he has felt awful when he ate gluten after being on it. Hopefully he will stick with the diet and his reactions will be enough to keep him compliant.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#13 eatmeat4good

 
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Posted 03 March 2011 - 10:56 PM

I'm so sorry that medical appointment was worthless.

Your son had a similar reaction to my son in mood disruption and behavior problems and stomach aches. I wouldn't have been able to keep him on it without the reactions. But each and every time there has been a mistake or challenge he gets really sick.

Sorry you didn't get help with gluten free foods, but I hope your son's improved health, mood and behavior continue. It is really a joy several months down the road to watch my son thriving. I hope it happens to your son too.

While my son was intitially reluctant to try the diet, it worked. He initially didn't want to talk about it with any teachers or peers either. But he has grown with it and he now tells certain peers at school about the effects of gluten. One peer he noticed appeared to be very drowsy and mentally absent in class. He said, "Mom, I remember when I felt like that every day so I just had to tell him about it." It is amazing what can come from being gluten free. It is kind of a process of accepting it, then sharing it. I think your son may get there too.

I hope your son will come to understand that Gluten Intolerance is just as serious as Celiac and I hope he will stay on the diet.

Wishing you well.
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#14 mushroom

 
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Posted 04 March 2011 - 01:13 AM

Unfortunately, there are too many doctors who do not believe there is such a thing as non-celiac gluten intolerance. They have not been taught it and therefore it doesn't exist. Doctors are like that. They can look the obvious in the eye, and because it is not in their experience or data base they will tell you flat out that black is white. If you are not celiac, gluten is not a problem :wacko:

Sorry doc(s) but for ever so many of us it is, and we don't need you to tell us. Our bodies tell us the answer and I don't give a darn what you learned in medical school 20 years ago before they even became aware that people who are not celiac can have gluten problems. Read the literature, go to the continuing education seminars, get up to date.

The reason so many people are suffering is because of the medical profession's obsession with the celiac diagnosis. Celiac is just the form of gluten intolerance they have developed a test for, in my book. Now those of a scientific bent will argue otherwise, because science rules over experience, but I say, why listen to science when it is going to ruin your health. Do what makes your body feel better. :)
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#15 zus888

 
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Posted 04 March 2011 - 07:11 AM

Sorry to hijack the thread, but does a positive gliadin antibody result point to gluten intolerance? Seems to me that anyone with a positive gliadin result would be considered gluten intolerant. And I'm willing to bet that there are a lot more false negatives (translating to more undiagnosed ppl) on that test as well.
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Suzanna




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