Positive Blood Tests - Can I go gluten-free before Endoscopy?

[taylorerin]

So, my brother got diagnosed with Celiac via endoscopy and blood test a few weeks ago and they recommended the whole family get tested. My blood results came back positive: 99 on tTG and 26.2 on Deamidated Gliadin IgG. I cut out gluten immediately after I got my results back until I went to my doctor 4 days later for the follow-up and he said that positive blood tests don't mean that I have Celiac disease, just that I have the antibodies, which means genetically I have the potential to get Celiac disease. Which didn't really make sense to me. Why would my body produce the antibodies if I didn't have an autoimmune response to Gluten??? 

But for those 4 days, I felt better than ever. My skin started to clear up (I've always had bad acne that I could never get rid of with creams or even prescribed topicals), I felt I had more energy than usual, and every time I ate something I kept waiting for something to happen, and NOTHING! I can often hear my body digesting, and I get bloated and really gassy after a lot of meals. I used to think I was lactose intolerant, because most of the discomfort was after cheesy meals... but now that I think about it, all of those meals have a lot of gluten too!! Pizza, pasta (always topped with cheese or a cream sauce of some sort), cheese sandwich, cake with cream cheese frosting, etc. And I've always just dealt with it and thought the bloating was just normal, to be honest. And even if I was lactose intolerant, I wouldn't give up cheese, because like... do you know how good cheese is!?!?! PLUS I've also had unexplained knee pain since high school (I'm 23 now), and have had iron anemia in the past (which I always chalked up to being a pescetarian and not getting enough iron in my diet). My ferritin levels are up in the 60s now (a year ago they were at 12), and that's with taking a double dose of Ferrous Gulconate on a daily basis for the past year... I would have expected them to be a little higher.

SO, all of that plus the fact that my brother already has his diagnoses has convinced me that I definitely have Celiac disease. I have a referral to get an endoscopy, but they haven't called me to make the appointment yet. The doctor told me to keep eating gluten until the endoscopy so that "any signs of inflammation would still be there." From the research I've done, any damage done by Celiac disease would take much more than a few weeks to disappear. 

Anyway, I listened to him and ate something with gluten yesterday for lunch and within an hour I had a headache and felt bloated and exhausted. I had to take a nap. And when I woke up I had new pimples on my face! 

I want to stop eating Gluten, but I want the endoscopy to be completely accurate so that I can get my official diagnoses. I really want to cut out as much gluten as possible while not risking getting negative results. 

Any suggestions? 

 

[Jmg]

1 hour ago, taylorerin said:

I want to stop eating Gluten, but I want the endoscopy to be completely accurate so that I can get my official diagnoses. I really want to cut out as much gluten as possible while not risking getting negative results. 

Hi and welcome

You sound like you've found your issue and I understand you can't wait to cut gluten, but you do need to be eating it for an accurate diagnosis. It's a lot easier to stay on it now than go back on it after a gap, a 'gluten challenge'. When you get your referraal for the endoscopy you can call the clinic and ask them if they can let you know if there's a cancellation so you can get in there sooner. Alternatively you could go off gluten until a couple of weeks before your test, but at that point you are maybe risking an inaccurate diagnosis...

[Feeneyja]

A gluten challenge is terrible.  I'm on week 4 of a 6-12 week gluten challenge and I want to just cry most days.  You may not get the health care and screening you need without an official celiac diagnosis.  I know it's aweful to go back to gluten now, but you are very close to being done.  

[Ennis-TX]

You have to be eating it at for at least 2 weeks prior to the endoscope. But getting off it then back on it later is MUCH worse.

PS on the lactose issues....I know it is a issue, I have been lactose intolerant for 10+ years. But there are a TON of alternatives. I use Dairy Free cheese from several companies (each has strong and weak points and areas they will work with other they fail) in almost every meal, I make my own cheesy bread rolls, cheddar biscuits, and cheese sauces I glob on everything all gluten and dairy free. I even found Dairy Free Cheese extracts.....like a extract you can put in sauces, soups, omelettes, etc. and make them taste like various cheese types. Stuff is amazing in romano, paremsan, and mozzarella in pasta sauces, or some cheddar in a salsa or taco sauce, blue cheese in a spinach soup with creamy base from coconut, cashew, or almond milk. The Brie works in just about anything. I love the cheddar extract in a broccoli soup in coconut milk and a bit of curry paste and turkey bacon. I make yogurt dips with coconut yogurt, I make my own dairy free and sugar free icecream.....I eat about 6L  of it a week blending it with coconut yogurt and protein powders in smoothies for quick easy meals. I make my own seasonings also for all kinds of cheesy flavors...I recreated doritos nacho cheese powder, cooler ranch powder, and made a chili and cheese powder that taste like the stuff on fritos.....you can imagine all teh stuff you can put these on >.> I go crazy them them on eggs, and veggies, even done a soup with them lol.

BUT you do need to get off actual dairy for a bit, the tip of the villi in your intestines are what produce the enzymes to break down dairy, and they are normally damaged and is why most celiacs develop lactose intolerance. You can reintroduce it in a few months and see how you fair but the first few to boost your healing faster you should probably give it up for a bit.

DF cheeses brand,

Daiya, shreds work melted in meals, breads, and cooking but taste like crap raw, the slices are great in everything and I love the smoked gouda and jalapeno havarti blocks

Follow your Heart, Do not melt all that good, but have decent flavor

Lisanatti, Shreds are PERFECT raw or melted, the blocks tend to smear and are quite useless with bad texture.

Julian Bakery, best for melting and using in recipes like my cheesy bread, the high coconut oil content and perfect starch emulsifier ratio cause it to melt and set up just perfect.

There are many others but these are my favorites and points on them.

[Gemini]

With the blood results that you have, you most likely have Celiac Disease. It's shame that the doctor failed to do a complete Celiac panel because if they had run the EMA along with it, and it was positive, that's a slam dunk for Celiac, from a blood test point of view.  When both tTg and EMA are positive, I think the percentages are 99% likely for Celiac. Then you have a brother with a diagnosis so that adds to the list of things that make it really probable.

You are correct in that you would not have antibodies without active Celiac but lots of docs say dumb things.....we are used to that. FYI....I had a completely positive Celiac panel and it was positive on all tests by over 10x the normal limit so that was my diagnosis. I refused the biopsy because I was too sick to have one.  No doctor has ever refused me testing because I did not have a biopsy.  In fact, I think they pretty much do too much testing so I make the decisions on what I have repeated or done.

If you want to go ahead with the biopsy to see how much damage there is, then just keep it to one slice of bread per day until that happens.  That is all you should need to eat.  If you have enough damage, it isn't going to heal fast enough before they do the biopsy so that should get you there.  Good luck and be happy that it was caught in time because undiagnosed Celiac makes it probable you would end up with more than 1 autoimmune disease!

[Feeneyja]

I'm actually thinking of insurance and approval of tests such as bone density. With a celiac diagnosis, they have to approve it even if you are "too young" to qualify for it.  That's the one that comes to mind.  

[taylorerin]

Thanks everyone! I've just been called and I have my appointment set for June 14th. Unluckily, that happens to be my birthday, but I want to get it over with as soon as possible! I could have gotten it done on Thursday or Monday but I'd have no one to drive me home those days, unfortunately. 

So only a week left of eating gluten! I'm probably just gonna stuff my face with all of my favourite foods that I won't be able to eat after! And try to finish off all of my "fake meat" vegetarian stuff that's not gluten-free. But I'm still gonna have real, not gluten-free cake on my birthday because it'll be the last time I can have it. ?

[Gemini]

1 hour ago, Feeneyja said:

I'm actually thinking of insurance and approval of tests such as bone density. With a celiac diagnosis, they have to approve it even if you are "too young" to qualify for it.  That's the one that comes to mind.  

I guess it depends on what you have for insurance.  I have a group plan through my employer and they approve everything that a doctor orders......  except for testing that is not mainstream. They also should "approve" bone density testing in petite, small boned women with or without Celiac. There are many other risk factors involved in having compromised bone density.

[Gemini]

44 minutes ago, taylorerin said:

Thanks everyone! I've just been called and I have my appointment set for June 14th. Unluckily, that happens to be my birthday, but I want to get it over with as soon as possible! I could have gotten it done on Thursday or Monday but I'd have no one to drive me home those days, unfortunately. 

So only a week left of eating gluten! I'm probably just gonna stuff my face with all of my favourite foods that I won't be able to eat after! And try to finish off all of my "fake meat" vegetarian stuff that's not gluten-free. But I'm still gonna have real, not gluten-free cake on my birthday because it'll be the last time I can have it. ?

Have fun eating your heart out and Happy Birthday!