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kate12345

5 Year Old Biopsy Today

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I do not know what to do. My 5 year old has been having stomach pain, where she begs me for medicine and screams and cries. She is in a severe amount of pain and she almost panics. She says it hurts all the time, but it certainly gets worse at points. She was put on Prevacid, which seems to help some. She is constantly on Tylenol. She tested positive on the DGP IgG, and that led to a biospy today. The dr did not see any "visual signs" of celiac. Did not see anything abnormal.

She cannot take Maalox or Prevacid due to the pH meter she has in her nose. It is reading in the 6 range all day, and I do not think it is going to come back with anything.

I am just fed up. She is in so much pain and has been for 2 months. She does not enjoy eating. Says stuff sounds good but does not taste good. Everything makes her stomach hurt.

We will get the pathology reports on the biospy, but the dr does not think it is that as he could see the villi and said it looked fine. That is next week before we get them.

What do I do. He said if this stuff is neg, we look at other things. Like gallbladder, etc. In the meantime she is suffering.

I asked if I should take her off gluten, but he said no to wait for the biopsy.

Any help is appreciated. I am just frantic because I cannot help her and she begs me to. Jennifer

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I've been watching your posts with interests - due to having two children going through much the same thing - but also because your daughter has i/s and so do I...its really very rare - so it perk my interest straight away.

I promise you - far often than not you cannot see the damage to the villli with the naked eye - it hardly ever happens. So they will need to look at it under the microscope before they can really say anything about it.

Good luck - I really hope it sheds some light.

Personally for me - I put both my kids on a gluten-free diet the moment they came out of their endoscopies. Because - why not? She has had the endo - and if its intolerance then it won't show up in the biopsy anyway. What could a gluten free trial possible hurt at this point? You know?

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OMG, I feel so bad for you, Jennifer, and for your dear daughter.

The news from the procedure is actually good. She doesn't have ulcers. The villi damage has to be from a radiologist, from biopsies taken.

Even if that doesn't show celiac disease, it doesn't mean you can't eliminate it from her foods.

Has she been to an allergist too? If not, I would arrange that asap. Good luck to both of you. I feel bad for both of you, you must be worried to bitts about her.

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I am praying that you get answers. I would definately try the gluten free diet if I were you. It certainly won't hurt and hopefully it will help.

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Now that she had the biopsy, I would at least trial the diet for a few months. IMHO nobody should be producing antibodies (provided she doesn't have any other autoimmune disorders that could falsely elevate the tests-which is very uncommom) unless they have celiac.

My youngest son(6 almost 7) had a positive IgA tTG only. I did not biopsy him. Hubby regretted not doing it so after 4.5 months of being gluten free we tried a gluten challenge with the intent of doing it for three months for a biopsy. Well my husband called it quits after three days! He said there was not way that my son(or him :P ) could handle three months of the symptoms he was having. So he is, for the most part, diagnosed celiac based on his symptoms, positive tTG, mom having celiac, symptoms improving gluten free and return of symptoms back on gluten.

My oldest son(10 almost 11) is currently doing a trial of gluten free but is not diagnosed celiac. He probably will be diagnosed as non celiac gluten intolerent. He has had repeated negative blood work(not borderline, like values at the lower end of normal) over the last 3 years. I had toyed with the idea of putting him gluten free for various reasons for over 2 years. What really got the ball rolling was seeing the growth explosion his brother has had since going gluten free. There is 4 years difference in their age and little brother was not that far behind his big brother. Also my oldest was complaining almost daily of severe abdominal/gas pains. His growth had stalled a lot too. So I took him to a GI to review his history and see if she would scope him for celiac. He had a negative biopsy also. I finaly put him gluten free 1.5 weeks after his biopsy. I have seen improvements and we couldn't be happier. My only regret was not doing it sooner. My husband though wants more proof, so the only thing left is to do a gluten challenge. Husband needs to see the "proof" that this is the way he needs to be since all his testing is negative. So the moral of the long post is sometimes tests can't give us all the answers we seek.

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I do not know what to do. My 5 year old has been having stomach pain, where she begs me for medicine and screams and cries. She is in a severe amount of pain and she almost panics. She says it hurts all the time, but it certainly gets worse at points. She was put on Prevacid, which seems to help some. She is constantly on Tylenol. She tested positive on the DGP IgG, and that led to a biospy today. The dr did not see any "visual signs" of celiac. Did not see anything abnormal.

She cannot take Maalox or Prevacid due to the pH meter she has in her nose. It is reading in the 6 range all day, and I do not think it is going to come back with anything.

I am just fed up. She is in so much pain and has been for 2 months. She does not enjoy eating. Says stuff sounds good but does not taste good. Everything makes her stomach hurt.

We will get the pathology reports on the biospy, but the dr does not think it is that as he could see the villi and said it looked fine. That is next week before we get them.

What do I do. He said if this stuff is neg, we look at other things. Like gallbladder, etc. In the meantime she is suffering.

I asked if I should take her off gluten, but he said no to wait for the biopsy.

Any help is appreciated. I am just frantic because I cannot help her and she begs me to. Jennifer

presuming the pH meter is supposed to be giving readings on stomach, it is WAY to high, and therein may lie you problem.....good luck

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Thanks for your input so far.

She is much better today as I gave her Prevacid. It makes eating possible for her. I have started her on gluten free stuff and have decided the whole family is going gluten free. Her brother had horrible stomach cramps and I do not let him have wheat, but that is all I avoid with him. But he will too go totally gluten free. I do not know what else to do at this point except start trying stuff. It is just terrible when they are in so much pain.

Someone suggested allergy testing. Do they have to be eating wheat for that? Is that something for a specialist or is it ok if the pediatrician does it? If you are not referring to blood work, let me know that too. Her brother came up with wheat allergies on his blood work, which is how I found that out with him.

Thanks so much. I think we learn more from each other than the drs.

Jennifer

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you should ask for a referal to a peadiatric alergist for testing. keep in mind though skin prick testing is not accurate, the skin is different to your GI tract. my daughter had an anaphylactic allergy to milk in baby cereal at 7 months, put didnt get a positive skin test until 18 months old

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No, you do not need to be eating anything for allergy testing because it is testing for a different reaction. The celiac testing is looking for specific autoimmune antibodies which are only present when the person being tested is being exposed to the substance which provokes the autoimmune response. If you are allergic once, pretty much always allergic whether you have eaten it in the last 6 months or not.

I would definitely put the whole family on a gluten free diet now, and maybe by the time you get the results back she will be feeling better :) Now that atesting has been completed there is no reason to continue gluten.

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