What's Next? Worth A Scope?

[sweetpeas327]

So, I've been lurking the forums for awhile and finally decided to join!  What a wealth of info!!  I'm looking to pick a few brains - hope you don't mind!

 

Here's my story...

 

My grandma (90yrs old) was 'diagnosed' with celiac in June of this year.  I say 'diagnosed' because different doctors soon changed their story & she's so confused, she quit the GFD.  Her biopsy came back negative but her bloodwork had '1' fairly high positive.  Symptoms only started in May!  Long story short, I can't get my hands on that lab work so am left wondering which one it was...  The more I've read, it's not uncommon to have a negative scope.  I'm not really sure how many samples, what the Marsh score was, etc...  Wondering if it was not 'bad' enough to diagnose it as celiac - maybe only a 1 or 2?  She's had a few hospital stays, numerous days where she can't leave the house for dizziness, stomach pain so bad she has to lie on her stomach for at least an hour, D, weakness and major fatigue!  She is normally super active and bakes 7 loaves of bread a week, owns a huge house & does all her own housekeeping!   She even looks after our 2 active boys sometimes!  She's not a 'typical' 90yr old!

 

Me: 34yrs old.  Canadian! 

July 28, 2014 blood work - I was told there was no total IgA done & they only did "what they do" - no way to request a total... ends up it was there all along in the computer!!  gah!!  So was waiting and waiting, trying to convince PCP to order one...

 

TTG IgA     2.3  Normal <10    Elevated >10

DGP-IgA    2.4  Normal <10    Elevated >10

DGP IgG   12.1  Normal <10    Elevated >10

Total IgA   1.80  range: 0.70-4.00

Total IgG   15.80  range: 7-16 (not sure why this one was done or exactly what it means?)

TSH 0.64 in April. (on medication)

 

I have no idea about my other vitamins & minerals as it was a major push to just get the celiac panel ordered... my sis and I don't have the 'typical textbook' classic symptoms...  Her bloodwork is very similar to mine with only her DGP IgG elevated at 11.8.

 

Conditions/symptoms - hypothyroidismX9 yrs, infertility, 4 miscarriages out of 7 pregnancies, IBS (undiagnosed, but lots of D of varying consistency and sometimes major C - sometimes within the same day!), bloating, gas, mouth sores (cankers), tongue sores, countless UTIs, swelling in my hands and feet - joints feel super tight and hard to bend my toes & fingers, mood swings (hard to admit...), horrible memory, bruise easily - even if our baby walks on my thighs!, eczemaX20+ yrs, heart palpitations (? just due to thyroid...), tired (worse again since baby #3) restless legs (both my mom & my mom's dad had it, plus my younger sis), and occasional night sweats.

 

I guess I'm just wondering what to do next...  I went to see my PCP again this week about it all.  She thinks that the DGP IgG could be elevated from any number of intestinal disorders or even just stress...  In all my research on pubmed and mayo clinic and other celiac centers, I've never come across ANY other cause to elevate that antibody - I mean, it is 98-100% specific for celiac!   There are also a ton of personal accounts on this forum with similar results.  She also doesn't believe it's 'elevated' as "it should be twice the normal for it to be high"...??   I've never really read that anywhere so was taken aback at the comment.  She doesn't think a biopsy will show anything and also doesn't believe there would be anyone that would even do one...  I'm just soooo lost.  I would love to get a definitive answer as it will affect my entire family - cooking, etc...  And really need to get our kids tested if I'm positive.  My younger sister (26) has no idea what to do - but has many more (and worse) symptoms than me! 

 

Any advice, information, experiences are welcome!!  Especially interested in anyone with similar results, how long it took to get a diagnosis, and how the diagnosis came about!  We are wondering about gene testing but it would be completely an out of pocket expense...  Looking at doing 8-10 people would be astronomical!    Right now it's just a 'wait and see' game - the worst idea but not sure where to turn!

 

Thank you in advance for any help!!!

[cyclinglady]

I was only positive on the DGP IGA and I had a Marsh Stage IIIB on my biopsy. NVSMOM usually says, "You can not be barely pregnant --a positive is a positive and that goes for celiac disease too." (Or something like that......)

Anyway, I am hoping she might pop up and add her thoughts since she resides in Canada. I would find another doctor who would refer me for an endoscopy. I do not think gene testing would be effective since 30% of folks carry this gene but only a few get celiac disease.

Keep eating gluten until all testing is complete!

I wish you well!

[nvsmom]

That's right, you an't be just a little bit pregnant. LOL . Welcome to the board.

Those celiac tests don't catch everyone. The blood tests can miss up to 25% of all celacs and the endoscopy misses as many as 1 in 5 celiacs. Sometimes this is aused by incorrect testing (not a long enough gluten challenge or not enough biopsy samples taken) but other times those tests show up negative for no apparent reason, as Cyclinglady stated with her own example.

My guess, and it s only an educated guess, is that you have celiac disease but you are in the early stages OR your body doesn't show a lot of autoantibodies. Also, things can change, I have hypothyroidism too but it took decades to diagnose me because my TSH would be high but when they retested a couple of weeks later it was normal again. Test results fluctuate so that high could usually be higher....and it is possible that it is usually lower but with a family history of celiac disease, symptoms of celiac disease, and a history of other autoimmune disease (hashimotos's hypothyroidism), I would say a positive celiac disease test means celiac disease.

To diagnose celiac disease, doctors like patients to meet 4 of the 5 diagnostic criteria:

celiac disease symptoms

Positive genetic tests

Positive celiac disease tests (they tend to favour the tTG and EMA tests, probably because the old anti gliadin antibodies test (AGA) was unreliable and the DGP is new)

Positive biopsy

Positive response to the gluten-free diet

According to this criteria, I do not have celiac disease because I did not have the biopsy done, and genetic testing was not offered.... Heck, I have never even seen a GI because the wait time was a year so I skipped it entirely - gotta love the health care system! LOL

I think you probably have celiac disease, and probably your sister and grandmother too. Your tests are all so similar that I think that is just how your family presents in testing (negative biopsy and lower positives). Remember that testing does not correlate to how one feels or what the disease is doing to you. Some people end up with mild symptoms, like your grandma, and others get a bunch of severe symptoms even if their test results are not strong. We are all very different.

Think about trying the gluten-free diet for a good 6 months and see how you feel, but make sure you give it a long trial. Some celiacs do not feel better right away, it can take months for autoantibodies to fall to normal. I had a few symptoms improve right away but other symptoms took close to a year to start improving.

You might want to retest your DGP again after going gluten-free for at least three months. If it has fallen then you will know it was elevated due to celiac disease... And not stress.

Best wishes.