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Celiac ?

sminty

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sminty Newbie
sminty
Posted

From browsing the forum for a few days, i'm sure posts like mine are made on a regular basis so i'd like to start by saying thank you to anyone who takes the time to read and/or contribute to my thread.

I've had symptoms of Celiac Disease for around 18 months now, and the most obvious, abdominal pains started after an extremely stressful time in my family's life. (Other symptoms include "noises" around my entire abdo area, swings between diarrhea and constipation, depression, day-long fatigue, mood swings and insomnia).

After seeing my GP he thought I may have some IBS (12 months ago) and tried me on Colpermin (peppermint oil), Buscopan (anti-spasmodic), and Amitryptyline along with referring to a Gastroenterologist and for an ultrasound scan.

The Ultrasound came back all clear, and the Gastroenterologist ordered full bloods (no Immunoglobulin A or Anti-tTg IgA antibody test though), and a gastroscopy (no biopsy). Bloods were clear, nothing shown on the gastroscopy.

Around the same time my abdo pains started my daughter started suffering with pain in her sides and stomach pains along with constipation - in addition her development (she is 11) has been somewhat poor physically and she struggles to put on any weight (different from myself in that i'm slightly overweight and my weight doesn't move outside of a couple kilos either way).

Our GP saw her two weeks ago and instantly said he thinks he problem is Celiac Disease and he'd be ordering bloods to corroborate his medical opinion (she is waiting for her appointment). After getting home and reading about the symptoms I went to see my GP today who said it's entirely possible I have Celiac, that he is unsure why the Gastro doctor didn't check on both the bloods and gastroscopy, and has sent me for bloods (Friday).

Sorry for the rant - do either of these sound like Celiac to you? My life and my daughters have been thoroughly miserable for the past 18 months and perhaps i'm looking at potential Celiac as some light at the end of a dark tunnel.

Thanks for any responses.

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ravenwoodglass Mentor
ravenwoodglass
Posted

Sorry you guys are having such a rough time. Yes it is quite possible you are both having issues with gluten. Do get full celiac panels run and if you are going to have the endoscopy stay on gluten until that is done. After all celiac related testing is finished then you both should do a trial of the gluten free diet no matter what the test results are. False negatives are not uncommon and they are even more prevelant in children than adults. Welcome to the board and read as much as you can here so you will be well prepared to start the diet when testing is finished.

sminty Newbie
sminty
Posted
  • Author

Went for the blood test Monday afternoon, here's hoping something shows up, thanks for the reply.

GFinDC Veteran
GFinDC
Posted

It does sound like it could be celiac. Celiac or gluten sensitivity, either one. There is a genetic component to celiac and gluten sensitivity so it would make sense that your daughter and you both have symptoms.

sminty Newbie
sminty
Posted
  • Author

Apparently my blood test came back normal, can't get readings of it though. No idea what to do now.

sminty Newbie
sminty
Posted
  • Author

Begged for results:

Anti-tissue Transglutaminase Antibody (tTg) : Negative

Immunoglobulin A : 5.15

eatmeat4good Enthusiast
eatmeat4good
Posted

Now you go on the gluten free diet very stricly and be careful of cross contamination to see if you are one of those who were a false negative on the test. Or to see if you are gluten intolerant. The tests have like what 30% false negative rate?

I wouldn't pay any attention to that. Time to start listening to your body. Eliminate gluten and see if it helps. Many people have had your exact same situation but they did very well on the gluten free diet. Like about at least half of us here.

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goodnews Apprentice
goodnews
Posted

Apparently my blood test came back normal, can't get readings of it though. No idea what to do now.

Mine came back negative a couple months ago, I thought at that point it wasn't even a possibility. Then I got an endoscopy and they saw some signs of celiac in the one sample they took. They then took a blood test to check to see if I have genes that correspond with celiac and if so they will do a repeat endoscopy with more samples. Honestly, even if the gene test or the extra biopsies come back negative I am looking forward to trying a gluten free diet (being the carb addict I am I can't believe I am saying this! :P ) But I just want to feel better and am going to try whatever it takes. Maybe it is a gluten sensitivity or something and it is worth a shot. Also going to do food allergy testing too.

Good luck, I wouldn't give up on getting answers just yet. My endoscopy looked completely normal they said, but the biopsy sample did not. So without the biopsy it is hard to tell what is going on sometimes.

ravenwoodglass Mentor
ravenwoodglass
Posted

Begged for results:

Anti-tissue Transglutaminase Antibody (tTg) : Negative

Immunoglobulin A : 5.15

If you are in the US you have a legal right to hard copies of those tests you shouldn't have to beg but you would need to sign a release. Also they did not do a full panel on you if those are the only results.

sminty Newbie
sminty
Posted
  • Author

If you are in the US you have a legal right to hard copies of those tests you shouldn't have to beg but you would need to sign a release. Also they did not do a full panel on you if those are the only results.

I'm in the UK, I also have an appointment through to see the Gastroenterologist at the end of April - what is a full panel, what does it cover so I can approach him about it if needs be?

Am seeing my GP on Monday to try to get a referral for Endoscopic biopsies.

ravenwoodglass Mentor
ravenwoodglass
Posted

I'm in the UK, I also have an appointment through to see the Gastroenterologist at the end of April - what is a full panel, what does it cover so I can approach him about it if needs be?

Am seeing my GP on Monday to try to get a referral for Endoscopic biopsies.

Serologic Tests

EMA (Immunoglobulin A anti-endomysium antibodies)

AGA (IgA anti-gliadin antibodies) Some people do not produce IgA antibodies.

DGP (Deamidated gliadin peptide antibody)

tTGA (IgA anti-tissue transglutaminase)

along with a total IGA

sminty Newbie
sminty
Posted
  • Author

IgA range: 0.71 to 3.79.

My IgA came back at 5.15.

My doctor is unwilling to order biopsies as the tTg test was negative.

Dunno what to do now, seems I just have to suffer.

ravenwoodglass Mentor
ravenwoodglass
Posted

IgA range: 0.71 to 3.79.

My IgA came back at 5.15.

My doctor is unwilling to order biopsies as the tTg test was negative.

Dunno what to do now, seems I just have to suffer.

Your IgA was positive. What you do now is the diet. Since you have positive blood work after you have been gluten free for 6 months or so have the blood test redone. Chances are that your antibodies will have gone down and that combined with your relief of symptoms the doctor may give you the 'official' diagnosis.

sminty Newbie
sminty
Posted
  • Author

Your IgA was positive. What you do now is the diet. Since you have positive blood work after you have been gluten free for 6 months or so have the blood test redone. Chances are that your antibodies will have gone down and that combined with your relief of symptoms the doctor may give you the 'official' diagnosis.

I don't understand. If my bloodwork was positive why don't I have a diagnosis?

When I see the GI doctor, are there relevant points I should look to raise with him? There is also the possibility of paying a BUPA peivate GI doctor to look at my symptoms and make a decision.

Thanks for the help.

sminty Newbie
sminty
Posted
  • Author

Is it possible for Celiac to cause abdominal cramps/pain within 30 minutes of eating gluten?

ravenwoodglass Mentor
ravenwoodglass
Posted

I don't understand. If my bloodwork was positive why don't I have a diagnosis?

When I see the GI doctor, are there relevant points I should look to raise with him? There is also the possibility of paying a BUPA peivate GI doctor to look at my symptoms and make a decision.

Thanks for the help.

Perhaps because your doctor like many doctors consider a low positive a negative. When you see the GI you should ask him to run a full panel including the DGP and total IGA.

Yes celiac can cause cramping within a short time of eating it. That was the case for myself when I was eating it daily. I had many interupted meals and wouldn't eat unless very close to a bathroom for years. Although now gluten free it takes a couple days for the GI effects to hit me.

In the end sometimes all we can do is try the diet when all testing is done as even with the biopsy, if your GI does one, there can be false negatives.

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    • rei.b
      High DGP-A with normal IGA

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      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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