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Celiac Or Ncgs?

Bttrfly62

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Bttrfly62 Rookie
Bttrfly62
Posted

Hey all! First time poster, here. I'm 33 years old. I've had Hashimoto''s since the birth of my first, of 3, kiddos when I was 23. It hasn't ever been well controlled, but has been pretty out of control since the birth of my last child (3.5 years ago). I started getting migraines with aura (I really never believed in a migraine until I had one- true believer and taker of Imitrex, and for a year Topamax, now!) and tummy issues- but most severe issue really was bloat. They did a colonoscopy (that wasn't fun) to rule out bowel cancer (sudden change in stool and bloating). When it came back negative, they basically said - must be female related. Obgyn said hormones are a funny thing- and I kinda just left it at that. Things were sometimes better, sometimes worse- but I just chalked it up to changing hormones and the effects of aging. I had always had fatigue and joint pain- but these are also common symptoms of uncontrolled (or sometimes even controlled) thyroid disease- didn't feel like there was much I could do about that. 

 

Anyway, that's just a bit of background of symptoms, etc. I was on levothyroxine (T4), and was being prescribed 300 mgc/day- yes, you read that right. My GP was monitoring the TSH. I asked him if that seemed excessive and he said- it happens over time... yaddi yaddi. I like him, but it seemed like a good time to go to an endo. She was shocked at the amount, and the poor response- still hypo. And immediately switched me to name brand Synthroid and even thought the new amount (175) would make me hyper because she said it's typically, at its max, weight based- meaning she thought 150 would be as much as I would ever need at full replacement. Well the numbers came back much higher than they were on 275 of levo (4.9) at a whopping 23. That is definitely not my highest set of numbers, but highest since starting hormone replacement nearly 10 years ago. 

 

She frowned and said unfortunately she thought I was looking at an absorption problem and that she suspected Celiac- especially with my history of gastro issues. She referred me. The tests the GI did and numbers below:

 

(I had asked my GP in Jan of this year if Celiac might be causing my severe and often painful bloat having read about the correlation between Hashimoto's and Celiac- he ordered these 2 tests with these 2 results and said if they were negative it was highly unlikely I had Celiac: ENDOMYSIAL IGA AB: NEGATIVE and IGA (standard range 79 - 347 mg/dL) 259, so I let it go and decided to stay off the internet)

 

GI Tests this week(who disagreed with the conclusiveness the GP claimed  of those tests above):

 

TRANSGLUTAMINASE IGA (NEGATIVE <4 U/mL; WEAK POSITIVE 4-10 U/mL; POSITIVE >10 U/mL) 8

GLIADIN IGG (POSITIVE >30 UNITS): 50

GLIADIN IGA (POSITIVE >30 UNITS): 40

 

Scheduling is supposed to call for an endoscopy, but that kind of thing is always so slow. The note with the results said "It looks like you may have celiac disease. The upper endoscopy with biopsies will tell us for sure."

 

That's a lot of information to get to my question- but essentially I wanted to know if those numbers could also be reflecting NCGS rather than full blown Celiac? I love gluten- even if my body doesn't.... I know the absorption issue wouldn't occur with NCGS- but, well I would just be interested to hear the numbers of those who have NCGS, or if anyone had numbers like mine with Celiac. I know they vary drastically from person to person, but other's experiences are helpful to me. Should I expect the biopsies to confirm? Or is this still anyone's game? 

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cyclinglady Grand Master
cyclinglady
Posted

Sorry to break this to you, but you have celiac disease! your GI is right! And your GP did not even give you the complete panel nor did he give you the right screening test (cheaper) -- the TTG IGA. The biopsy will confirm it for sure. It can also tell you just how damaged your intestines are. You must continue to eat gluten until all testing is complete and make sure that GI takes up to six, yes, six samples. The intestinal tract is vast. The small one is like the size of a tennis court! It is easy to miss patches of damage with one or two biosy samples.

I would recommend researching celiac disease until your endoscopy. The University of Chicago's celiac website is a good place to start.

Yeah, Hashi's and celiac often go hand-in-hand. Once you go gluten free, be sure to get you thyroid tested every six weeks. You will find that your dosage will have to be adjusted down. It could take months for your thyroid to stabilze.

Bttrfly62 Rookie
Bttrfly62
Posted
  • Author

Well- that's a bummer! I eat gluten like every 3 minutes. Yeah I'm bloated and uncomfortable- but it's like being overweight and eating cake anyway, totally worth it!! I don't want to risk future health though. Got 3 beautiful babies! I guess the positive is that I might not be so tired all of the time. I really did just think I am the laziest person on Earth and really felt like a pretty terrible person for being so tired. Would be nice to think I might have more energy! But sad that I can't have my cake and eat it too- literally. :huh:

 

Can you tell me which of those numbers is the one that leads you to the conclusion of Celiac? Thank you for the site recommendation! I will be binge reading for the next two weeks- with gluten in my hand because it's still allowed! 

 

thank you so much for your prompt response! i really appreciate it!! 

cyclinglady Grand Master
cyclinglady
Posted

Your TTG was positive and you do not have an IGA deficiency (the test was a control test that validates the TTG IGA test), and the Gliadins were both positive. Out of the complete celiac panel, I was only positive on the DGP IGA. The rest were all negative yet I had a Marsh Stage IIIB on my biopsy (moderate to severe villi damage. Visually, my endo looked okay.

You can bake delicious cakes and cookies that even gluten eaters will love. My gluten-eating kid requested my gluten-free chocolate mayonnaise cake over a bakery made cake offered up by her Grandma.

Your energy should improve with the diet and proper thyroid medication (absorption). There are some other things to check like bone density, vitamin levels and anemia.

Bttrfly62 Rookie
Bttrfly62
Posted
  • Author

Pinterest, here I come!!

 

I will definitely ask for those tests, too. Is bone density a blood test? They did do my B12 (at my behest because of lack of energy), but it was in the "normal" range so she said I didn't need any supplement on that one (315 - NORMAL..................... 180 - 914 pg/mL). 

 

Thank you again!! 

 

It's funny- We did 23 and me as a family a couple of years ago and it said I had an increased risk for Celiac (and oddly enough, Lupus) and I laughed and said they must just randomly assign things that might be wrong with you because there is no way these gluten eatin girl's body would reject it! Maybe there was something to that test... kinda think I should take a second look at the kiddos' results too, now.

 

For those Celiac's with kids, is it important to test the kiddos? Or do you just kinda wait and see? I never had symptoms as a child, so I don't know if changing the diet decreases the risk of celiac in the future. (read, read, read!) 

bartfull Rising Star
bartfull
Posted

After you've read the U. of Chicago Celiac link, go to the coping section here and read the Newbie 101 thread. Make sure to click on all of the links there too. You may even want to take notes.

 

Then check out the "What's for dinner" thread here. You'll get lots of ideas for fabulous foods and meal you can make. When you're ready to try gluten-free bread I highly recommend Udi's WHOLE GRAIN. (They make white bread too but I think it tastes nasty.) The whole grain though, reminds me very much a french bread. Makes a great grilled cheese too. (I'm a bit of a grilled cheese addict. :lol: )

 

You may go through gluten withdrawal for a week or three - headaches, mood swings, ravenous hunger. But then you'll start feeling better.

 

And since you are obviously having malabsorbsion issues it would be a good idea to get your vitamin and mineral levels checked. We are often low on B12 and D and a bunch of other things.

Bttrfly62 Rookie
Bttrfly62
Posted
  • Author

Thank you so much! I will definitely check it out and I am a big note taker! 

 

Do people who have an intolerance, but not Celiac, have elevated numbers as well? Sorry for all the questions. I'll stop now and read. 

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squirmingitch Veteran
squirmingitch
Posted

And because you keep asking the question then I will assure you of the answer. You DO NOT have NCGI. There is no test for NCGI as of this time and NCGI will NOT show any positives on the tests you were given. You do have celiac disease.

 

Now, all your first degree relatives should be tested every 2 years. Celiac can present at any age. AND there is such a thing as silent celiac where the person has NO symptoms. So they should all be tested CORRECTLY every 2 years.

 

Welcome to the board! 

 

Have a blast eating gluten. Eat all your favorites like a gluten glutton to bid them goodbye. Honestly? You really DO get over the gluten loving thing. I could care less. Someone could set a fresh donut down in front of me now & I wouldn't give it a second thought.

Bttrfly62 Rookie
Bttrfly62
Posted
  • Author

I really appreciate you answer regarding NCGI. I'm a stubborn one- you should have seen the look on the GI's face when I was trying to negotiate some gluten into my diet if it did turn out to be Celiac. I had heard you really adjust and don't miss it (much like giving up fast food- which I did years ago and just don't miss one bit), but it's getting over the hump.... 

 

I will go and read the suggested pages/links and just really appreciate everyone's responsiveness! Great page! 

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