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Possible Celiac Further Advice

dalek100

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dalek100 Apprentice
dalek100
Posted

Hi, 

I am ever so sorry for posting again. Previously, I posted about having a positive anti-ttg test. I had a colonoscopy but the preparation for this didn't go very well at all. I have had a history of bowel problems that have gone on for a while and the Gastroentrologist diagnosed it as just being IBS. I was previously tested for Celiac even when I was 18 years of age and am now in my thirties and was negative until now. 

My appointment to see the Gastroentrologist is due for next week and wondered if I could ask for some guidance at all. Usually, on a morning I have bread (2 slices) with nutella on and on weekends have been having sandwiches. Over the last couple two weeks, I have been trying to eat as much as I can but have been having a gurgling sensation and severe constipation and then diarrhoea. I was wondering if what I am consuming food wise is still enough for it to be detected? This is the closest I have ever got to an answer to my bowel problems and I am significantly underweight now as I only weight around 8 stone 4 and should be around 10 or 11 stone. 

I wondered if the Gastroentrologist can diagnose it based on my symptoms and blood test now or whether I will still have to go through with an endoscopy as I was told there is a huge waiting list for this at my current hospital. 

I also have pernicious anemia that came up unexplained years back when I started having bowel problems and my Mom also has this and has also recently been diagnosed with diabetes. I am not sure if this information is relevant though but she was told that diabetes is an auto-immune disease. 

Thank you to everyone on this forum and for the support given to me already. 

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Gemini Experienced
Gemini
Posted
27 minutes ago, dalek100 said:

Hi, 

I am ever so sorry for posting again. Previously, I posted about having a positive anti-ttg test. I had a colonoscopy but the preparation for this didn't go very well at all. I have had a history of bowel problems that have gone on for a while and the Gastroentrologist diagnosed it as just being IBS. I was previously tested for Celiac even when I was 18 years of age and am now in my thirties and was negative until now. 

My appointment to see the Gastroentrologist is due for next week and wondered if I could ask for some guidance at all. Usually, on a morning I have bread (2 slices) with nutella on and on weekends have been having sandwiches. Over the last couple two weeks, I have been trying to eat as much as I can but have been having a gurgling sensation and severe constipation and then diarrhoea. I was wondering if what I am consuming food wise is still enough for it to be detected? This is the closest I have ever got to an answer to my bowel problems and I am significantly underweight now as I only weight around 8 stone 4 and should be around 10 or 11 stone. 

I wondered if the Gastroentrologist can diagnose it based on my symptoms and blood test now or whether I will still have to go through with an endoscopy as I was told there is a huge waiting list for this at my current hospital. 

I also have pernicious anemia that came up unexplained years back when I started having bowel problems and my Mom also has this and has also recently been diagnosed with diabetes. I am not sure if this information is relevant though but she was told that diabetes is an auto-immune disease. 

Thank you to everyone on this forum and for the support given to me already. 

Yes, 2 slices of bread per day and sandwiches should be enough to test correctly.  I would hate to have you get really, really sick because you ate more gluten than needed for testing.  But keep it up and make sure to eat that amount every day....as hard as that is, I know.  Your other symptoms are all symptoms of Celiac and if the diabetes your mother has is Type 1, that is the one that is autoimmune and highly linked to Celiac.

If you failed the complete Celiac panel testing by high numbers, then that should be enough to diagnose, with the symptoms you are having, but if they only did one antibody test, then the endoscopy might be demanded before they give you a diagnosis.  However, damage can be patchy so it has happened that people can have a negative biopsy even with active Celiac Disease. This is why it is best to have as many samples taken from different parts of the small intestine as possible. Be pushy about testing and don't let them make you wait a long time.  That really is unacceptable.

Would it be possible to have them do a full Celiac blood panel on you?

I forgot to add that you need never apologize for posting here. We are here to help so ask as many questions as you like.  :)

Jmg Mentor
Jmg
Posted
17 minutes ago, dalek100 said:

I am ever so sorry for posting again.

Please don't apologise! You're very welcome here and please don't be afraid to post whenever and whatever you wish. There are no foolish questions, all of us were where you are now once. 

There's not much data on 'how much' gluten you should eat but CyclingLadies link from the other thread has some guidance: 

Open Original Shared Link

Sounds like you should be fine as is :)

26 minutes ago, dalek100 said:

I wondered if the Gastroentrologist can diagnose it based on my symptoms and blood test now or whether I will still have to go through with an endoscopy as I was told there is a huge waiting list for this at my current hospital. 

Not sure, they typically tend to want to look, endoscopy is the 'gold standard' although there are people on here who have been diagnosed without one, so it's not set in stone. From what you've said so far they will very strongly suspect celiac and may be happy for you to proceed straight to the diet so you can hopefully put on some weight, so really one to discuss with the consultant.  Stay on gluten till you speak to them though!

Also speak about the waiting list. It may be that you can call on a regular basis to check for cancellations for example, or there may be another hospital in the same trust that could offer you a quicker service.  Be sure to write some notes before your meeting so you dont forget to raise a point, easily done in stressful circumstances. 

 

3 minutes ago, Gemini said:

Would it be possible to have them do a full Celiac blood panel on you?

Definitely ask, but not sure if available in UK aside from maybe private labs. Here they are:  

tTG IgA and tTG IgG
-DGP IgA and DGP IgG
-EMA IgA 
-total serum IgA and IgG (control test to ensure tests are not false negatives)
 
One final point, I know this is horrible and stressful but I get the feeling you are close to some answers and hopefully finally some healing and relief. Be positive for these last weeks and try and pick out some foods to enjoy!
 
Best wishes and lots of luck :)
 
 
dalek100 Apprentice
dalek100
Posted
  • Author

Thank you so much for all the help and support you have given me. I cannot thank you enough.

I am ever so sorry to post again here but wondered if I could check with you about this. When at work, I very rarely get chance to eat a lot and so have always been eating the Milky Way UK bars, which I believe contain gluten or barley. I usually have around 6 of these as they tide me over until getting home. I also have two slices of bread on a morning. I was wondering whether this would be sufficient as I am worried in case I haven't had enough gluten? 

Thank you for everything and I wanted to apologise for being a nuisance on here.

Jmg Mentor
Jmg
Posted

From what I've read 2 slices a day should be enough for the challenge. I think they'll have more gluten than the milky way's.

Now I want a milky way :(

Have one for me tomorrow dalek100!

 

dalek100 Apprentice
dalek100
Posted
  • Author

Hi, 

I am very sorry for posting back again. I have visited the consultant today and he said that the TTG is mildly elevated - does this mean it is a positive? The consultant said that as I tested negative for Celiac on three previous times, he thinks something else could be going on so came home worrying even more. The consultant has organised an endoscopy and requested it as a fast track and requested an urgent CT scan. 

I was wondering if there is anything that I can do to best prepare for the endoscopy? Does my gluten amount seem to be enough with the 2 slices of bread on a morning? Is it also possible for the TTG to have become mildly elevated because of other conditions? 

He mentioned to me that the colonoscopy didn't work really because of how it was clogged up and that the bowel prep didn't work. 

I have also noticed that I am experiencing major constipation as well - I will have diarrhoea then it will fluctuate to constipation as well and have an awful gurgling sensation as soon as I eat anything like bread. 

Thank you again for everyone on here. It is a wonderful forum. 

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