Will 2 weeks gluten free affect biopsy results?

[kentu]

Hi! I got a "diagnosis" (in quotations because no tests were ran) of IBS-D about two years ago. After many empty-handed doctor visits I finally got referred to a GI this month. I've had all of the run-of-the-mill symptoms: nausea, heartburn, stomach pain, cramps, bloating, (without going into TMI territory) a "leaky gut", eczema, low energy, high amounts of fatigue, fogginess, depression, anxiety, pins and needles in hands/feet, ataxia (so glad this is a thing, by the way, I've turned extremely clumsy over the past year, and I truly thought I was going insane).

My GI's initial thought was that I may have celiac disease, which surprised me. As it turns out, my first cousin has celiac disease, as do a few other people on my father's side of the family. My GE put me through the bloodwork and went ahead and scheduled a biopsy (plus colonoscopy) for the 23rd, the idea is to check everything, "but you've probably got celiac disease" (his words). I had heard of celiac disease but didn't know much, and my GE didn't give me any specifics. The next day I called about the test results, as I was highly desperate for some relief. The nurse wasn't super helpful, but she told me I got a weak positive on TTG-IGA - wouldn't give me many more details. So I asked "weak positive, nothing to worry about then?" and she replied "I wouldn't say that. I can't really tell you much, sorry." I don't know what my numbers are exactly, but my GI's employer is part of the Mayo Clinic network. Open Original Shared Link says a weak positive is between 4.0 - 10.0U/mL, so it's safe to assume my results were somewhere in that range - I had a full panel ran, but that's the only result I know of so far.

Que me Googling and learning everything there is about celiac disease! From what I read, "a positive is a positive" seems to be the answer to weak positive questions... So I decided to try going gluten free for one week, starting that day, just to see. After a week of meticulously checking labels on anything I've eaten, I'm happy to say it's been spent almost entirely devoid of nausea, heartburn, bloating, pain, cramps, etc. You name it, it's now gone or greatly reduced. Eczema is clearing up, my head's been clear, and my anxiety and depression seem very distant after the last few days. It's a vast improvement, as I was very prone to getting "morning sickness" as my boss and I like to call it. I've regularly been 15-20 minutes late for work no matter how early I wake up due to morning nausea, multiple bathroom trips, low energy, dizziness, all that. Was not late one single day during my time going gluten free. It's fantastic! My only issue after going gluten free is feeling "wired but tired" - energized but drowsy at the same time, I guess. Figure that'll also clear up sooner or later. My original plan was to eat gluten and continue eating it after the initial week, as to not interfere with the biopsy, and once I get the final confirmation go gluten-free again and move on. In all, I had 18 bloodwork panels/stool test ran, the doc seems very thorough. My GP had requested the test results be sent back to him, so I may go tomorrow about the "wired but tired" feeling and see what he suggests.

As the week deadline is today, I ate 6 Keebler Club crackers, after having a gluten-free salad about 6 hours beforehand, I felt perfectly fine at the time. Within an hour I had 8/10 heartburn, shooting stomach pains, feel shaky, lightheaded, headache, and the dreaded "fog" has returned. I've forgot what I was doing multiple times already. Fatigue is setting in hard. No I'm stuck thinking "how did I live like this for so long?" and my question is... Do I NEED to have gluten in my system for the biopsy (which is now 11 days away)? Damage to your stomach doesn't heal that fast, right? I've read it takes a few years. I honestly didn't expect the crackers or gluten free diet to do anything, but now I'm pretty much convinced I do indeed have celiac disease. Still legitimately worried I've jumped the gun and my GI is going to tell me the bloodtest result was too low or find no damage in my stomach, maybe it's denial, not certain. I definitely do not want to spend the next 11 days with the brain fog I have right now, though! Any thoughts? Just bite the bullet for 11 more days or should I be safe going gluten free again?

[ravenwoodglass]

Welcome. I am sorry to say that you really do need to keep on gluten until your biopsy. Just a slice of bread or a few crackers would be enough.

You could try calling the GI office and asking for the doctor to call you back. Explain that you went gluten free for a week and what happened when you added it back in.  A few doctors will diagnose based on blood work, response to the diet by resolution of symptoms and the return of symptoms when gluten eating is resumed.  There may be the possibility of getting you in sooner for the endo or putting you on a cancelation list if you can get in for the endo on very short notice.

You are in a tough spot, one I was in myself many years ago. If you have to do the full 11 days on challenge is there any way you can take sick or vacation time or talk to your boss so that he/she understands that you may not be fully functional until the procedure is done?

Take comfort in the knowledge you gained that one week gluten free that the end is in sight. You will likely have some ups and downs after you are able to finally eliminate gluten forever from your life. Use those 11 days to prepare your home for the gluten free lifestyle and to learn what you need to do to keep yourself safe.

Ask any questions you need to and do read the Newbie 101 thread at the top of the Coping section.  It will have a lot of valuable information on what we need to do to keep ourselves safe.

[Jmg]

5 hours ago, kentu said:

Just bite the bullet for 11 more days or should I be safe going gluten free again?

Bite the bullet. Tell the doctors about the reaction to going gluten free and take the telling off for starting the diet before testing complete.

After the biopsy you will either get a positive diagnosis or a negative. If negative, you have to decide whether to pursue the gluten free diet anyway. I suspect you will as I did. Not everyone who has a problem with gluten tests positive for celiac, either due to the vagaries of the testing (do you have damage in areas beyond the endoscope etc) or differing reactions to blood tests. 

Best of luck!

[kentu]

I'll bite the bullet for the remaining time, don't want to mess with the results more than I have already, thanks for the input!

12 hours ago, ravenwoodglass said:

You are in a tough spot, one I was in myself many years ago. If you have to do the full 11 days on challenge is there any way you can take sick or vacation time or talk to your boss so that he/she understands that you may not be fully functional until the procedure is done?

No time off unfortunately (under-staffing for the betterment of the company, right? ) They all know of my situation, however - as I've lost a lot weight over the last few months, down from a 6-month peak of 115lbs to 107lbs (!) with absolutely no diet changes. My BMI currently is 17.3, so it's weight I can't really afford to lose. Most of my co-workers say soon enough I'll just waste away into nothing, so I got a lot of questions when I finally went to see a GI, haha. The good news is my bathroom scale puts me back at 110lbs already. Not sure how accurate it is though. Going by doctor visit numbers. The goal is to see if I can hit 118lbs so I'm not officially considered underweight... Hoping I can actually start doing workouts when I'm "fixed" as I do not have the energy currently. Many, many attempts to keep a routine going have failed so far because I get petered out waaay to fast.

10 hours ago, Jmg said:

After the biopsy you will either get a positive diagnosis or a negative. If negative, you have to decide whether to pursue the gluten free diet anyway. I suspect you will as I did. Not everyone who has a problem with gluten tests positive for celiac, either due to the vagaries of the testing (do you have damage in areas beyond the endoscope etc) or differing reactions to blood tests.

Unless the doc finds another issue that explains my symptoms and weight loss I will definitely stick with gluten free regardless of the diagnosis and see how it treats me over the long term, I definitely can't ignore my experiences thus far. May have made it worse on myself by doing the gluten free week, but it's given me hope, and with that I'll be fine for 11 more days.

Thanks!

[Jmg]

Then good luck and I hope you're soon on the way to feeling a whole lot better.