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I'm So Frustrated!

ptkds

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ptkds Community Regular
ptkds
Posted

I got tested for celiac last week, and I just got the results back. They were all normal. The paper they sent me listed the tests they ran, and they were Gliadin AB, IGG, and IGA. My dd had a high IGG test result and I thought for sure that I would have the same thing. WE plan on having my dh tested, but I may also ask to have a biopsy because I have had chronic diarrhea and stomach aches for 5 yrs.

I also talked to the ped, and I asked her if there was anything else that could have caused my dd's levels to be high, and she said that there was nothing else and she seems pretty convinced that my dd has celiac disease. But the GI doesnt' think she has it, but he is doing a biopsy at my request on the 16th. I was hoping to get a positive with my test (even though I REALLY don't want to go on the diet) so I wouldn't have to put my dd through the IV. She already hates the dr's and nurses, and this will just make it worse.

So what do I do if the biopsy is negative? Should I just try her out on the diet? How long should I give it to see results?

I am so frustrated and I am just tired of thinking about all this. I just want a definite answer so I can get on with my life and stop being in this "what if" stage we seem to be in right now.

ptkds

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Guest nini
Guest nini
Posted

Positive dietary response is a very valid diagnostic tool, you may just be gluten intolerant and not Celiac, but it is still treated the same way.

My personal opinion is that the biopsy and blood tests miss entirely too many people that eventually end up testing positive after getting sicker and sicker.

You don't need a Dr.s permission to go on the diet.

Ursa Major Collaborator
Ursa Major
Posted

I agree with Nini. But if you really want an official diagnosis, you could try Open Original Shared Link. Their testing is much more sensitive, and diagnoses many people that tested negative on conventional tests. It would also tell you if you have the genes, and which ones. Of course, it isn't cheap. But if you don't want to put your daughter through having the biopsy, it's the way to go.

On the other hand, your daughter tested positive on her blood test. If she responds positively to the diet, you would have a valid diagnosis, too. And since she inherited the celiac disease gene from somebody, and you have the symptoms, it is likely you. It would be an awful lot cheaper to just try the diet and see what happens.

If you decide to give the diet a try, click on the link on the bottom of Nini's post, to get her 'newbie survival kit', it's an invaluable tool for people new to the diet, and will save you from a lot of frustration. You need to scroll down to the bottom of her webpage.

vampella Contributor
vampella
Posted

Hi,

I'm sorry you have to go through this. I know how you feel. it plain SUCKS. there is no better way to put it.

How old is your DD? Mine is 3 and we are NOT doing a biopsy because I took it upon myself to get my DD better and put her on a gluten-free diet. I couldn't sit around any longer while they "tried" to figure it out, she was dying..or that's how it seemed.

she's is doing so great. The time you see results on a gluten-free diet change from person to person. it depends on the amount of damage done. I was seeing changes in my daughter in 48 hours. her stools had become normal the end of the first week and that just confirmed everything for us. we have been doing this for 20 days. I know alot as there is a ton of celiac in my family. I now just have to learn to cook higher fat foods to put weight back on her. she's almost 4 and 25lbs - 2 oz she lost at last weeks check up. She lost over 4 lbs in 2 months and the story goes on and on and on.

I just wanted to touch on the fact that yor dd's biopsy is not far away, hang in there if that is what you want to do. The IV is not going to be a problem. well not here atleast at out childrens hospital all Iv's are started after they are asleep. they even get to choose from 12 different flavours to breath in off the mask. I know this because my DD who has celiac had surgery when she was 18 months and my 6 1/2 yr old DD, just had surgery yesterday on her ears. All was well and after she was awake she "loved" surgery....until the pain kicked in....Now..NOT so much lol.

If I were you, I have been you. I would go straight to the diet.

Good luck, hope all works out for you!

Char

azmom3 Contributor
azmom3
Posted

I'm just curious if you've had any allergy tests run? My son had high IgG, but the other numbers were normal. The doctors are still looking at celiac as a possibility (biopsy end of November), but both our GI dr. and allergy doctor told us that high IgG can also be a sign of someone being very allergic. My son has tested positive on skin and blood allergy testing for many more things than he has tested negative, so we are also having biopsies of other areas at the same time to look for eosinophilic disorders (symptoms mimic GERD, but do not respond to medication). I NEVER even suspected GERD, but after looking at all the problems he's been having that's the first thing the GI dr. said it sounds like. She immediately put him on prevacid to see if symptoms improve. Regardless, we are doing the biopsies to figure out where the problem(s) are so we can get him better soon.

Guest cassidy
Guest cassidy
Posted

If your daughter had a positive blood test, then she has celiac. I realize putting her through the endoscopy will be traumatic, so what if you tried her on the diet and only tried the biopsy if the diet didn't help? I had several endoscopies when I was a child and I am still terrified of doctors. I remember about 6 people strapping me down on a bed to try to get blood out of me. I still shake when I have to get blood drawn. Since she has already tested positive, do you have to make her go through that? I realize some people NEED to have an official diagnosis, but a positive blood test is an official diagnosis.

As far as your results, if you had a negative blood test you may also have a negative biopsy. That happened to me and I certainly have a problem with gluten. I tried the diet and my results have been amazing. I feel 100% better on the diet.

So, basically you are dealing with tests that are only 50% accurate. If you have had symptoms and your daughter tested positive, then I would guess that you have it and she got it from you. I know that is very, very tough to accept and it may take a while. But I would give it some thought before you put both of you through expensive medical tests that may not give you any answers.

You could get a definite answer by going on the diet. If you don't feel better in a few weeks, then you may not have it. However, if you do feel better, there is your answer which is free and doesn't cause pain or trauma.

Doctors are only people and most of them don't know much about celiac and lead their patients down the wrong track. My gi doctor was going to do surgery for gerd last February and told me I didn't have celiac. I cancelled the surgery 3 days before because I had put myself on the diet and I was feeling great. If I had listened to them I would have had another unnecessary scar on my stomach. I was seeing the best gi docs in the city and they all 5 of them said I needed surgery and didn't have celiac.

girlfromclare Apprentice
girlfromclare
Posted

I know what you mean. We are in exactly the same situation. My sons bloodwork all came back normal today and I started crying. What kind of a mother does that make me? I am so sick of the 'what if' stage also, because we have been dealing with the symptoms for four years and were so certain that celiac disease was the issue. I cant offer any advice im afraid as I am in the same boat and am waiting on my husbands test resutls to be done so we can see if he has it. At least that would be something. I hope you get some answers soon and you arent alone! This is the most frustrating thing EVER!

Best of luck

Liz x x

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tarnalberry Community Regular
tarnalberry
Posted

liz, please do give the diet a try, after your husband's test. it's another valid test that is important. the blood results aren't as important as finding what helps your son.

grapegrace Newbie
grapegrace
Posted

only one of my sons antibodys were elevated (and only by one pt). im very lucky to have a dr. that is not eager to do a biopsy. try the diet, then do the biopsy. i noticed great improvement in my son in just a few days. i dont need the agony of putting him thru a biopsy, if he responds to the diet, thats all i need to diagnose it!

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