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Could this be anything other than celiac.

Kyz1981

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Kyz1981 Newbie
Kyz1981
Posted

Hi, I had a nasty bout of pneumonia last yr and managed to land up in hospital With sepsis, I also managed to get CDIff whilst there. I was treated and it all cleared up well but had repeated stomach problems and joint pains, was tested for lupus ( negative) and sent to a GI Dr who thought I had post infectious IBS ( 6 months after sepsis) . He did a screening for loads of stuff and it came back that I was very low iron a strongly positive test on the TTG (103) normal range on Lab is 0.0-7.

he told me he was certain I had celiac and has scheduled an urgent endoscopy next week,  He has told me to go gluten free straight after endo. 

 

I have had odd auto immune things going on for years and almost yearly would go and ask for my thyroid function tests as felt so odd, palpitations, feeling like some one is sitting on my chest, weird tingling in my fingers, dizziness, constipation and gas pains that are so sharp your doubled over, alopecia areata  I kinda thought that they were all In my head or everyone got them so I am shocked to think I may have found a reason for feeling like crap for years.

I guess I'm kinda worried that I will have the endo and it will be negative and I will be back to square one.

Still in shock really.

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kareng Grand Master
kareng
Posted

With a ttg over 100, there will be damage.  Slightly elevated ttg can mean something else.  100+ is extremely elevated.  It will just depend on how good your gi is.  Hopefully, he will take at least 6 samples.  Celiac damage an be spotty.  You can have some good sections and some bad ones, it's possible to miss the and section.

Kyz1981 Newbie
Kyz1981
Posted
  • Author

Thankyou that is reassuring. I am hoping it's quite simple diagnosis and I can start the journey to recovery soon.

cristiana Veteran
cristiana
Posted

Hi!  I just wanted to say that your story reads so like mine symptom-wise in many ways, except I felt like someone was sitting on my shoulders, not my chest - most odd! My readings were 100 plus too.  I also suspected they would find no damage and then I would be none the wiser.   A good GI will take lots of samples.  Let us know how you get on.:)

treclmr Newbie
treclmr
Posted

Leaky gut not in medical industry language 

kareng Grand Master
kareng
Posted
 

Leaky gut not in medical industry language 

I don't think any of us mentioned that?  But there is medical research on "leaky gut".  If you would like to discuss that , please start a new topic in that section

Sugarcube Rookie
Sugarcube
Posted

I think it would also be helpful to run the full celiac panel at this stage. This would then help for tracking progress on a gluten-free diet.

 

 

 

 

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kareng Grand Master
kareng
Posted
 

I think it would also be helpful to run the full celiac panel at this stage. This would then help for tracking progress on a gluten-free diet.

 

 

 

 

Don't see why.  She has an exceptionally positive test and is getting a biopsy.  When a ttg is that high, it can only mean celiac .  Check the univ of Chicago celiac center site for more info.  Not able to link right now.  She can follow up in 6-12 months with the dgp and the ttg and see how they look then

Sugarcube Rookie
Sugarcube
Posted

Kareng -  There is no harm in having all the information upfront to use as a basis for comparison later and to be certain

I also had an 'exceptionally' positive ttg >150. (normal range 7), but after treating my giardia  (but remaining on a normal diet) the ttg levels have dramatically decreased by>70% just 3-4 months after giardia treatment.  I will be re-testing ttg levels at the 6month mark to see if they will return to normal levels. So from my own experience, I cannot yet agree that a high ttg alone is confirmation of celiac.

The ttg test is helpful in most cases, but not in all cases.    Particular care is required if the patient has other auto-immune conditions.

Kyz1981 Newbie
Kyz1981
Posted
  • Author

I don't have any other auto immune disorders as yet, I was diagnosed by a gp with alopecia areata by a GP and not a dermatologist just on the basis of patchy hair loss, this was about 6 months after having my son and resolved after that.

I am in the UK and the only screening test they run is the TTG if I was negative on this the. They may agree to run others but as I was positive they are just taking more bloods to check my iron, b12, calcium and TTGs again, and CRP levels- ( when I had sepsis these were very abnormal and went back to normal quite quickly). It was 6 months after the C-diff that I had the TTG levels taken so I would have thought that would have resolved by now and there is no evidence I belive of C-diff causing elevated TTGs. I have also tested negative for all gut infections after sending stool samples for testing. I was put on a 14 day course of metronidazole for the c-diff that would have wiped every infection out.

having said that my mum had auto immune thyroid problems and  my grandfather was late onset type 1 diabeties. 

they have given me an urgent endo appointment on Tuesday so hoping I can get results quickly. They are also running TTGs on all of my kids. But I'm hoping that it's celiac and I can start to repair my body and feel better, as I am more worried about what it could be if it's not..... For as my husband says at least with celiac you know what's causing it, you don't have to take a medication and you have some control ( he has crohns and has 2 bowel operations ) so he is not being unsympathetic. 

they don't track gluten free diet in the UK unless symptoms persist I think. 

Sugarcube Rookie
Sugarcube
Posted

Kyz1981 - Coincidently, im also from the UK. My Gastro was able to run the below tests during my clinic appointment. They also checked my bone density as celiac is known to be a risk factor for osteoporsis.

-Endomysial AB IGA
-Gliadin IgG
-Gliadin IgA
-IGA

 

 

Kyz1981 Newbie
Kyz1981
Posted
  • Author

You must have a good Gastro. My clinic was 8 am on a Sunday morning as they are so over run ( bucks). 

I was so suprised to get the result as I expected to be discharged back to my GP as I though being celiac was not likely.  I even told the Gastro. There is no way I am celiac as although I can't stomach wheat but I can eat gluten smugly.

i will see if the nurse can add it on, actually checking the blood form it says celiac serology so maybe that is a full screen, it also says celiac in the diagnosis bit. I am getting them to check for diabetes as I have been paranoid for a while that I may have this as was feeling really sick after eating carbs that would bring a spike in blood sugar, but I think that may be something to do with this as I have no sugar in my urine. 

The dr did say I would need a bone scan and would put in an urgent refferal to a dietitian after the endo so will see what that says.

i did go grain free, high fat and low carb for around 6 months a years or so ago and felt amazing however I would have still been consuming gluten just not loads, however when I was in hospital with pneumonia they just wanted me to eat and I thought I would restart at so point but other things namely being lazy got in the way. The pneumonia was the one thing that suddenly got all the Drs to sit up and listen as it's quite rare for a 30 yr old with no chest issues to catch pneumonia that leads to hospital admission.

 

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