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Hi

I am new to this forum. I have only recently come to the conclusion that I may have celiac disease. I have been having stomach pains that come and go which were so bad a year ago I had to go up to the hospital emergency. They found white blood cells in my urine and put me on antibiotics. The pain subsided but then flaired up again and this time I was having pain around my liver. I had ultrasounds done of my liver, gallbladder and stomach and they were all fine. Then this year around easter time, it flaired up again. I had a constant gurgling in my stomach which was accompanied by pain. I went to the doctor and she got me tested for celiac disease. The blood test came back negative though I have since read you need to consume gluten regularly for 12 weeks prior to the test for the results to be accurate. I gave up all wheat products prior to getting pregnant in 2009 and remained wheat free for my pregnancy. It is only after giving birth that I started to have the occasional wheat products. I had been to the doctor approx 6-12 months after my son was born complaining of fatigue. He just put it down to being tired from having a newborn. I have been to doctors over the years and felt like a hypochondriac.

I had never thought I had a problem with gluten before. When the doctor suggested it may be celiac I immediately gave up gluten. It got to the point where I didn't want to consume any food because I was in so much discomfort. I went off it for 2 months and by about the 7th week started to feel a lot better (after the fatigue and brain fog lifted somewhat).
I am booked in to have an endoscopy in July and have reintroduced gluten 7 weeks prior to my test to help with its accuracy. It is hard to be deliberately poisoning myself but I need answers for myself and I am concerned my 3 year old son may have celiac too. It is important I get a clear diagnosis so then I can begin getting him tested.
The first gluten I consumed after reintroducing it was vegemite (a yeast extract made from barley). My nose ran, I sneezed a lot and my throat was sore. I have since had pretty much a permanent headache.
I also need to find out for sure as my partner doesn't really take this seriously.

I went to a nutrition doctor back in 2007 and my results from blood tests were:

• low vit B12

• low white cells

• low platelets (essential fatty acids)

• iron deficiency

• iodine deficiency

• calcium deficiency

• vit C deficiency

• zinc deficiency

• impaired liver detox function

At the time I thought I had a well balanced diet with lots of fruits and vegetables. She didn't check me for celiac back then. I did have a food allergy test done and I was negative for wheat allergy. I thought this meant I could consume gluten if I wanted to not realising they were separate issues.
I have always felt like I was not absorbing my food properly. I now know I cannot tolerate gluten and look forward to a life of abstinence. I just have to get through the next 2 months first!

 

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Hi Scarletgrrr,

 

I hope you get some definitive answers and you make it through to the other side to avoiding gluten..  I can relate to that long term feeling that you were not absorbing your food.  My husband and I wondered if I was getting anything from my food, or just from my supplements.  Every time I would run out of a supplement I seemed to go off the deep end.

 

I hope you get excellent help,  will get to the root cause, and will be delivered from the tummy pains.  I hope some supplements can be found that will help you until your body can absorb the food better.

 

Diana

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Welcome to the board. I wish you luck with your gluten challenge, I hope it isn't too difficult for you.

After your 7 weeks on gluten, I think you should have the celiac panel run again. You probably won't get another chance for an accurate blood test again. The full panel is:

TTG IgA and tTG IgG

DGP IgG and DGP IgA

EMA IgA

Total serum IgA (control test)

AGA IgA and AGA IgG (older tests)

I think you should get your son tested immediately as well. If he is ill, there is no point putting it off. The DGP tests are often the most reliable for young kids but be aware that kids have a higher false negative test rate. If he has a negative test you should retest after some time ( every year or so) if he is eating gluten. My kids tested negative but showed symptoms so they are now gluten-free - don't forget that he doesn't need a diagnosis to go gluten-free for improved health. :)

Best wishes!

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Hi Scarletgrrr,

 

I hope you get some definitive answers and you make it through to the other side to avoiding gluten..  I can relate to that long term feeling that you were not absorbing your food.  My husband and I wondered if I was getting anything from my food, or just from my supplements.  Every time I would run out of a supplement I seemed to go off the deep end.

 

I hope you get excellent help,  will get to the root cause, and will be delivered from the tummy pains.  I hope some supplements can be found that will help you until your body can absorb the food better.

 

Diana

Thanks Diana

I try to remember to take supplemements everyday. They do make a difference.I have been taking vitamins for years which is probably one of my saving graces. My sister and brother in law are doctors and they used to look down at me taking vitamins saying I will have expensive urine. So glad I didn't listen to them. They now have come around and take them too. Funny how behind the medical world can be sometimes.

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Welcome to the board. I wish you luck with your gluten challenge, I hope it isn't too difficult for you.

After your 7 weeks on gluten, I think you should have the celiac panel run again. You probably won't get another chance for an accurate blood test again. The full panel is:

TTG IgA and tTG IgG

DGP IgG and DGP IgA

EMA IgA

Total serum IgA (control test)

AGA IgA and AGA IgG (older tests)

I think you should get your son tested immediately as well. If he is ill, there is no point putting it off. The DGP tests are often the most reliable for young kids but be aware that kids have a higher false negative test rate. If he has a negative test you should retest after some time ( every year or so) if he is eating gluten. My kids tested negative but showed symptoms so they are now gluten-free - don't forget that he doesn't need a diagnosis to go gluten-free for improved health. :)

Best wishes!

Thanks Nicole

I too think it is a good idea to redo the blood tests. I will get my doctor to give me the full panel you have listed above.

My son isn't ill but he has shown some signs. He was in the 95th percentile for weight when he was a baby which has dropped right down to about the 75th %. He suffers from eczema, has complained on a few occasions of having tummy pains (with no gastro or food poisoning present). His stools are not well formed.

After my endo in july I will be putting the family on a gluten free diet (I am the cook around here!) If my results come back as being celiac I will get him to have the blood tests.

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I didn't include all the symptoms I have had which made me suspect celiac.

Here are some of them:

• hearing loss

• tinnitus

• lump in breast that was very painful

• upper back pain

• tingling around spine

• tingling in my toes

• arthritis in my wrist

• pain in my hands

• stomach pain and gurgling

• pain around my liver after eating certain foods

 

After giving up gluten for 2 months most of these symptoms disappeared. The most striking were the breast pain, tinnitus and hearing loss. The next 7 weeks are going to be tricky, getting these symptoms back again. The breast is already painful.

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