Uncertain diagnosis

[mandms]

Hi all, I don't normally do this sort of thing but was wondering if there was anyone else out there who has been in a similar situation.

I got tested for celiac disease with a blood test and endoscopy 7 weeks after reintroducing 4 slices of bread a day into my diet. My blood test results showed that I have no IgA antibodies (but I have low secretory IgA levels), an DGP IgG of 2 U/mL (normal <7), a slightly elevated calprotectin level of 68 (normal <50), and was positive for one HLA-DQ2 gene. I have had a few blood tests since while still eating gluten and results are still within normal ranges, although my dr says my secretory IgA levels keep dropping. The endoscopy showed a patchy but definite increase in intraepithelial lymphocytes. I also have hashimotos, another autoimmune disease.

My GP thinks that I am in the early stages of celiac disease. I do have issues with digestion and fatigue when consuming gluten. My specialist, who specialises in celiacs, thinks it sounds like it, but isn't.. Although he has given me a re-occurant blood test form to check for antibodies whilst remaining on a gluten diet. I am not so keen on staying on this diet because of the symptoms, but I would rather receive a formal diagnosis after eating it for so long (now 4 months in).. I have tried searching the board for people who have been in a similar situation and how their diagnosis turned out. Anyone have any thoughts?

TIA

[Awol cast iron stomach]

Hi I'm still undiagnosed but my cousin is a diagnosed celiac with additional AI. My current Drs ruled out many of my former diagnosis I had 20 years earlier of IBS, asthma, etc. Lots of my prior diagnosis' are not found/confirmed now, but neither is gold standard celiac. There is quite a bit that shows gluten issues on symptomology and dramatic difference with it removed and reintroduced in me, I was unable to handle the 4 slices a day challenge. After 6 days it got real, real bad. I could not do it longer. My reaction was so bad we removed gluten entirely from my home where as for 4 years before my gluten-free stuff was segregated.

I do not have a gold standard diagnosis which would have been helpful, but myself, my husband, children, have been with me long enough over my 4 years off, reintroduce on etc. That we all know I have a problem. 

I see so many of my symptoms on here or in books that describe me perfectly. The stories and books i read that are most like me are where other ibs or celiac people are missed for a very long time. My cousin and I share some common symptoms the most astonishing the same sacroiliac issues. Hers went away after diagnosis and gluten-free living mine goes away remaining gluten-free. If I get cc it comes back with many other symptoms. My symptoms after being gluten-free are more dramatic now. 

It took my cousin over 2 years and almost a dozen Drs to figure it out. She is a very bright nurse and a tough gal so she really had to be a relentless advocate for herself because her peers just didn't get it. After sharing my own issues and hearing her issues I told her I can't commit to 2 years of eating gluten and various Drs to get this diagnosed.

I deserve a proper diagnosis but I have to accept what we suspected 4 years ago I cant eat it weather celiac or NCGS as my husband says results in the same end result no gluten.

I have bounced ideas off a number of people here and while not Drs I am impressed with their knowledge. i have too many warning signs about gluten intolerance that I must remove it from my life. As many know it'd be much easier to not have  to do this. It however is very apparent that it is not for me 

I wish you luck on your journey. 

[ironictruth]

9 hours ago, m&ms said:

Hi all, I don't normally do this sort of thing but was wondering if there was anyone else out there who has been in a similar situation.

I got tested for celiac disease with a blood test and endoscopy 7 weeks after reintroducing 4 slices of bread a day into my diet. My blood test results showed that I have no IgA antibodies (but I have low secretory IgA levels), an DGP IgG of 2 U/mL (normal <7), a slightly elevated calprotectin level of 68 (normal <50), and was positive for one HLA-DQ2 gene. I have had a few blood tests since while still eating gluten and results are still within normal ranges, although my dr says my secretory IgA levels keep dropping. The endoscopy showed a patchy but definite increase in intraepithelial lymphocytes. I also have hashimotos, another autoimmune disease.

My GP thinks that I am in the early stages of celiac disease. I do have issues with digestion and fatigue when consuming gluten. My specialist, who specialises in celiacs, thinks it sounds like it, but isn't.. Although he has given me a re-occurant blood test form to check for antibodies whilst remaining on a gluten diet. I am not so keen on staying on this diet because of the symptoms, but I would rather receive a formal diagnosis after eating it for so long (now 4 months in).. I have tried searching the board for people who have been in a similar situation and how their diagnosis turned out. Anyone have any thoughts?

TIA

First, sorry for the limboland. 

A study published in Italy this past summer confirms the existence of seronegative celiac and you know with your IGA levels, this may be the case forever, or until new tests come out. 

Did they try tacking on any of the old AGA tests to see if you are positive to them?  Testing is weird, I tested moderate positive on Inova's combined IGA/IGG test but within normal limits on the separate tests, except two extremely weak positives which I was told to discount. According to a study by Inova, the folks in a group they tested who had this happen were celiacs on a gluten-free diet or relatives (I have a brother). 

So, I share your frustration as I had non specific inflammation when the DGP tests came back conflicting. 

You could continue eating it for a couple of months and see if the doc will do a repeat scope. 

The other option is to stop eating it and see if you improve. There seem to be a lot of folks with Hashimoto's on a gluten free diet, so it may make sense regardless. Try doing the Hashi's gluten research.  

Where is your specialist? 

Good luck!  keep us posted it's certainly very interesting.

[mandms]

Thanks for your replies, appreciate the info. I did ask if there was any other antibody tests that could be performed seeing as I have a low IgA, but they said no, I might try asking again. My specialist is in Queensland, Australia. It certainly is frustrating being in limbo, hopefully if I get a repeat scope I will get some answers. Will update when I find out results. Hope you both had a good new years!  

[emma6]

since you are Iga deficient, did they test you for TTG IgG aswell?  if not, i'm in Sydney so not sure if this is helpful but douglass hanly moir pathology seem to include ttg IgG when a celiac panel is requested compared to other pathologies which i've only got ttg iga with the same referral.

[Jmg]

On 12/30/2016 at 2:23 AM, m&ms said:

Hi all, I don't normally do this sort of thing but was wondering if there was anyone else out there who has been in a similar situation.

I got tested for celiac disease with a blood test and endoscopy 7 weeks after reintroducing 4 slices of bread a day into my diet. My blood test results showed that I have no IgA antibodies (but I have low secretory IgA levels), an DGP IgG of 2 U/mL (normal <7), a slightly elevated calprotectin level of 68 (normal <50), and was positive for one HLA-DQ2 gene. I have had a few blood tests since while still eating gluten and results are still within normal ranges, although my dr says my secretory IgA levels keep dropping. The endoscopy showed a patchy but definite increase in intraepithelial lymphocytes. I also have hashimotos, another autoimmune disease.

My GP thinks that I am in the early stages of celiac disease. I do have issues with digestion and fatigue when consuming gluten. My specialist, who specialises in celiacs, thinks it sounds like it, but isn't.. Although he has given me a re-occurant blood test form to check for antibodies whilst remaining on a gluten diet. I am not so keen on staying on this diet because of the symptoms, but I would rather receive a formal diagnosis after eating it for so long (now 4 months in).. I have tried searching the board for people who have been in a similar situation and how their diagnosis turned out. Anyone have any thoughts?

TIA

I did what many on here did, eliminated gluten myself from my diet, experienced a dramatic improvement, then went through a testing process which I'd perhaps compromised from the outset. I had a negative blood test and biopsy but the consultant told me that I should avoid gluten for life based on my reaction to the challenge. At that point I made the decision to end the diagnostic process and obey as strict a gluten-free diet as if it had been positive.

It would've been nice to have that validation, but there's plenty of research indicating that non celiac gluten intolerance, a diagnosis based on exclusion of celiac with reaction to gluten-free diet,  will soon be testable and is a very 'real' condition, just frustratingly difficult to identify.

In the end of course its your choice and maybe comes down to how important that diagnosis is to you. I think from what you've wrote you'll wind up avoiding gluten, so it's just whether you can get any different testing in before that happens. 

Best of luck!