Sorting out Celiac--Symptoms and testing HELP!

[Run2TheCoffeeShop]

Hello!  I have been a reader of this forum for a while and have been struggling to find a clear diagnosis of what my gut issues are for probably 5 years. I was told back in 2012 that I had IBS-C, I thought in my mind that I had a gluten issue as well in addition to a known lactose intolerance so I cut gluten out of my diet and felt great. Since 2012 I have gone back and forth between being gluten free and consuming gluten, trying to find a link between severe constipation, distention, bloating, smelly smelly flatulence, and mucus in my stool. I was also diagnosed in 2014 with a stress fracture and had a DEXA scan done which showed low bone density (osteopenia) to my lower lumbar spine.  I do at times have intermittent joint pain as well.  Nothing has seemed to fit the bill for a clear cut diagnosis.  Last summer I challeneged with gluten for 7 weeks (2 of those weeks were in Europe consuming french pastries), my doctor actually told me that a "craft beer a day" would be sufficient for a reaction to present so I enjoyed my summer drinking beer, having an occasional (every 2 weeks bagel) etc.  My IGA antibodies can back within normal limits so no deficiency and my TTG IGA came back 4.9 (according to the test, anything less than 20 is considered negative), but I still to this day feel awful when I am on gluten. After seeking out a new GI, I was told to have a colonoscopy done but I am unsure if this will reveal anything gluten related since it is not an endoscopy. Additionally, they ran new IGA and DGP tests. Does anyone have any thoughts on whether or not it is safe to avoid gluten all together?  Since being off gluten for 5 days, I have noticed an increase in stool and mucus in my stool but I am unsure if this has anything to do with it. I would rather have a positive diagnosis so I know for a fact that this is what is wrong! 

[Jmg]

Welcome

25 minutes ago, Run2TheCoffeeShop said:

does anyone have any thoughts on whether or not it is safe to avoid gluten all together?

It's perfectly safe, indeed for many of us it's essential! Gluten has no nutritional value and although there are some implications to a gluten free diet you absolutely do not need to eat it to have a healthy diet. 

It sounds like you may also be a member of the club, but at the moment you don't have any definitive answers. If you're going to pursue them there's some hopefully useful info in the stickied faq and also here: 

From your account your 7 week challenge may not have been enough time, people differ on how quickly antibody levels drop. So you may want to have another crack at diagnosis, or given:

33 minutes ago, Run2TheCoffeeShop said:

I still to this day feel awful when I am on gluten.

you could just decide to go strictly gluten free for life and get on with feeling better. I say strictly because if you dont follow celiac diagnosis to the end I think you have to assume you have it and live accordingly, otherwise you could be putting yourself at risk.

Best of luck!

[KathleenH]

Hi! I'm sorry you havent been feeling well for so long . How did you feel when you werent eating the gluten? I had the same original diagnosis of IBS with constipation. Also I have has similar problems with stress fractures so that really could be an indication that something greater is going on. Although your IGA came back low I have heard of people getting low numbers but having an endoscopy that showed damage. I would get the colonoscopy it cant hurt but maybe see if your doctor would be willing to get you an endoscopy is everything comes back fine from the colonoscopy. Also in general how is your diet? Do you eat enough fruits and veggies and few processed foods?  

[Run2TheCoffeeShop]

2 hours ago, KathleenH said:

Also in general how is your diet? Do you eat enough fruits and veggies and few processed foods?  

Thank you for your support! I eat mostly fruits and vegetables with minimally processed foods. When I do eat processed foods I try to buy the healthiest options available. Id say my biggest weakness for processed foods are bars like larabars and the new perfect bars. Also, gluten free pretzels! I removed other items from my home like tortilla chips to resist temptations. At work it is challenging at times since I work overnight 50% of the time--I will often snack on no butter popcorn and mini chocolates and have one meal with veggies and protein. 

 

The stress fracture was a big indication for me that something else could be the root cause of everything but I dont want to get myself pigeon holed into thinking it has to be celiac if it is not. The dietary restrictions are just so much more rigid for a diagnosis of celiac diasease vs. gluten intolerance and I dont want to make the mistake of being misdiagnosed as intolerant if I am in fact celiac and causing greater harm and inflammation to my GI tract.

[Jmg]

Hello again  Reading this:

27 minutes ago, Run2TheCoffeeShop said:

The dietary restrictions are just so much more rigid for a diagnosis of celiac diasease vs. gluten intolerance

I think this:

20 hours ago, Run2TheCoffeeShop said:

Does anyone have any thoughts on whether or not it is safe to avoid gluten all together?  

now makes sense, sorry I don't think I interpreted your post correctly in my previous response.

If you've just had the new blood tests done you shouldn't exclude gluten AT THIS POINT as if theyre positive they will want to do endoscopy and you will be back stuck doing gluten challenges. So until the diagnostic process is complete, stay on it!

I think also from what I read that you see two forms of gluten free diet. For intolerance you avoid most gluten, for celiac you rigorously enforce a strict no gluten diet, no exceptions. Do I have that right? I think you need to look again at this as I don't think this approach is helpful. There may be some people who struggle with digesting gluten and are better off avoiding it, but if you have a problem with the auto immune system and gluten, either celiac or non celiac gluten sensitivity, then absolutely ALL gluten must be avoided for the diet to work in alleviating symptoms. 

At the moment you're 'a little bit pregnant'  Either on the diet or off it. I understand why the diet may seem overly restrictive and that you don't want to follow it if you don't have to, so I strongly recommend you fcomplete your current diagnostic process and thoroughly confirm or exclude celiac. If positive then you have your answer and the diet (strict as you know) is the treatment.

If negative... and this you may not like, but after reading your post I strongly recommend it....  follow the diet STRICTLY and without exceptions as if the diagnosis was positive for a few weeks at least, noting your symptoms in a food journal. If you improve (and if you suffered on the gluten challenge) then again, you have an answer and the diet is the treatment.  

For what its worth I got the second answer, but I wouldn't contemplate slackening my adherence to the diet because the evidence from my own body was ultimately worth more than any label from a physician. 

Best of luck to you, I hope you find the answers and relief you seek