Testing started after ER visit BUT dr said to stop gluten first??

[olive1]

I was scheduled for two celiac bloodtests (listed as anti endomysial ab and anti gliaden ab on the order from PCP, who had ordered testing reluctantly) after a few months of symptoms, primarily painful bloating, increased heartburn, diarrhea, fatigue and intermittent bouts of abdominal pain. I also had developed vitamin D and ferritin deficiencies. The day before the bloodwork, the pain became extremely intense, similar to childbirth contractions in intensity (I have had two children). The diarrhea was also extreme. I missed the tests and went to the ER where they diagnosed a bleeding ulcer (no scope was performed) and referred me to see a GI. I saw the GI the next day, having not eaten anything in about 15 hours. The ER team put me on a restricted diet (bread, rice, applesauce, bananas - but I only had rice and applesauce). GI wanted to test for celiac and other things, rejected the ulcer diagnosis (but did not do a scope), and told me to stop eating gluten since it would alleviate symptoms in case of celiac or a sensitivity. Like the PCP, he said the full celiac blood panel isn't necessary, which makes me a little nervous. I asked about stopping gluten before the bloodwork was run or a scope, since he indicated the possibility of a scope in a couple of weeks, but he blew me off and said it wouldn't matter for the blood or scope after such a short time. I did the bloodwork after 2 and 4 days of no gluten (two draws). Everything I have read and celiac friends say NOT to stop the gluten before a possible scope, or else I will have to do a gluten challenge. Dr says this is wrong. I am very confused, since each medical professional tells me something different and I want to make sure the testing is done properly so we can get a real diagnosis. I am afraid of that pain coming back as badly as it did. I just ate gluten for the first time since Sunday afternoon to try to undo upsetting scope results, if the scope is needed. Were the few days without gluten enough to throw off my bloods? How long without gluten is enough to upset a scope/cause a false negative?

[kareng]

6 minutes ago, olive1 said:

I was scheduled for two celiac bloodtests (listed as anti endomysial ab and anti gliaden ab on the order from PCP, who had ordered testing reluctantly) after a few months of symptoms, primarily painful bloating, increased heartburn, diarrhea, fatigue and intermittent bouts of abdominal pain. I also had developed vitamin D and ferritin deficiencies. The day before the bloodwork, the pain became extremely intense, similar to childbirth contractions in intensity (I have had two children). The diarrhea was also extreme. I missed the tests and went to the ER where they diagnosed a bleeding ulcer (no scope was performed) and referred me to see a GI. I saw the GI the next day, having not eaten anything in about 15 hours. The ER team put me on a restricted diet (bread, rice, applesauce, bananas - but I only had rice and applesauce). GI wanted to test for celiac and other things, rejected the ulcer diagnosis (but did not do a scope), and told me to stop eating gluten since it would alleviate symptoms in case of celiac or a sensitivity. Like the PCP, he said the full celiac blood panel isn't necessary, which makes me a little nervous. I asked about stopping gluten before the bloodwork was run or a scope, since he indicated the possibility of a scope in a couple of weeks, but he blew me off and said it wouldn't matter for the blood or scope after such a short time. I did the bloodwork after 2 and 4 days of no gluten (two draws). Everything I have read and celiac friends say NOT to stop the gluten before a possible scope, or else I will have to do a gluten challenge. Dr says this is wrong. I am very confused, since each medical professional tells me something different and I want to make sure the testing is done properly so we can get a real diagnosis. I am afraid of that pain coming back as badly as it did. I just ate gluten for the first time since Sunday afternoon to try to undo upsetting scope results, if the scope is needed. Were the few days without gluten enough to throw off my bloods? How long without gluten is enough to upset a scope/cause a false negative?

It does matter.  Don't stop eating gluten until all tests are finished.  Maybe check for another GI?

"Any changes in your diet can affect the accuracy of your biopsy results. You must be eating gluten every day, in an amount equivalent to at least 1 slice of bread, for at least 2 to 3 weeks before the procedure. If you are scheduled for a biopsy and are not eating gluten, talk to your doctor about what is necessary to obtain accurate results. If you have eaten gluten only a short time before the biopsy, you and your physician will not know if a negative test result is accurate or due to your diet."

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"For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge.

• Prior to blood testing we recommend 12 weeks of eating gluten.
• Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten."

 

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[olive1]

Ugh. I will try to find another doctor. He was acting like I didn't know what I was talking about but I was pretty sure it was the other way around. Are there sources for recommended doctors/GIs who have better knowledge about appropriate testing procedures? I live in a smaller town so my options for quality care may be more limited.

[tessa25]

If you want to do the full celiac panel quickly, you can buy the test online at walkinlab.com and get it done at your nearest Labcorp today. You can give the results to your next GI. The downside of this method is it's not covered by insurance and costs $298.00. But it'll guarantee you get the full panel.

It's called the "Celiac Disease Comprehensive Antibody Profile" and includes:

TTG IGA and IGG

DGP IGA and IGG

EMA

IGA

 

Just a thought.

 

[olive1]

I suppose I can order the tests myself, but I also was hoping to find a doctor who can actually assist on this mess. I saw that celiac.org does have a search function to locate physicians. Trying that now. The first person I tried doesn't have any opening until October. 

[olive1]

Okay, I found a dr about a half hour away, soonest appointment is in 3 weeks. If they have a cancellation they will call. They said of course I should not have stopped eating gluten before testing and don't know why anyone who is a GI would say that. They asked for the name of the dr. I will get back onto gluten in the meantime. 

[Victoria1234]

1 hour ago, olive1 said:

Okay, I found a dr about a half hour away, soonest appointment is in 3 weeks. If they have a cancellation they will call. They said of course I should not have stopped eating gluten before testing and don't know why anyone who is a GI would say that. They asked for the name of the dr. I will get back onto gluten in the meantime. 

Glad you finally got good advice! Will they be doing the blood test first, the proper way? Hopefully they will do it on your first visit and it won't just be a new patient consultation. Good luck to you!

[olive1]

I'm not sure. They didn't mention anything over the phone - I  imagine it will be more of a consultation appt and then the GI may order labs and/or an endo. I am a little worried that it will be three weeks until the appointment and then more weeks until the next step, but I have to (re-)start somewhere. Even though I started on this mess of a journey a year ago, nearly.  It has just reached fever pitch now so I am less patient.

[Victoria1234]

4 minutes ago, olive1 said:

I'm not sure. They didn't mention anything over the phone - I  imagine it will be more of a consultation appt and then the GI may order labs and/or an endo. I am a little worried that it will be three weeks until the appointment and then more weeks until the next step, but I have to (re-)start somewhere. Even though I started on this mess of a journey a year ago, nearly.  It has just reached fever pitch now so I am less patient.

So many ppl here had years, if not decades, suffering and waiting. It's pretty normal . Try to think of it as a time period where you can enjoy, possibly, the last yummy gluten foods of your life, lol. Trying to put a positive spin on it may help a little bit.... just a little? Ok maybe not but try  at least you found a doc that sounds good so far!

[olive1]

There has been a few years of symptoms of random kinds, but I saw a few neuros for the neurological stuff and just dealt with the rest. Then last summer everything started to take a bad turn, and this winter it got MUCH worse, culminating in a trip to the ER this past weekend. It does seem like diagnosis, for celiac or anything else that isn't simple, can take years, and it certainly has! But it has been nearly a year of all but begging for help and being brushed aside quite a bit. I know so many people have certainly been in the same place, treated like hypochondriacs. Hopefully the answers will come soon, and I do hope this latest doctor will be helpful! I had a mini bagel this morning after the GI's office confirmed that I need to be eating gluten, and my belly swelled enormously soon after (from the bagel or because of another digestive issue we'll soon find out). My son said "well, that doesn't look normal." I will eat bread but may or may not enjoy it! 

[ravenwoodglass]

You don't have to have a lot of gluten for the antibodies to stay active. A couple slices of bread, or the equivalent should be enough. Some find it easier on their systems to eat their daily dose before bed so you may want to try that and see if it makes your day easier. If you are being woken up by D at night make sure the doctor knows that is happening. IBS doesn't do that so it will be ruled out if that is happening to you.  Immodium might help you get through the day also. I used to take a dose before I left the house in the years I went misdiagnosed.  Be sure to sign a release so that your new GI can get copies of any blood work you have had done. You could try calling the office and asking if you can get sent a draw slip of if they will call in the order for a complete panel so the doctor will have the results the day of your first visit. Many GI's will also allow you to go on a cancellation list for the endo if you can get in quickly.

I hope you get some answers soon. Do read the Newbie 101 thread at the top of the Coping section for a lot of good info as you will want to give the diet a good strict try after all celiac related testing is done no matter what the results.

[olive1]

That is super helpful! I had stool testing done (that was a pleasant experience!) to rule out something infectious. I can call the new GI office back after this round of bloodwork and other labs comes back to see if they want to order the balance of tests in advance of the appt so we have more to go on. I always get copies of bloodwork/labwork so I can do my own homework and bring to appts. I hate when I show up and the dr clearly hasn't opened a file or looked at anything. I will definitely be strict with trying the gluten-free diet after all testing, including endo if appropriate, to see if there may be a sensitivity even if not celiac. I have been vegetarian for decades so I am used to checking labels carefully. For the brief period that I was doing gluten-free per this first GI doc I googled any unfamiliar ingredients, but it wasn't many. 

Thanks for the advice and support everyone. This is the most I have ever shared about my digestive system.

 

[plumbago]

22 hours ago, olive1 said:

Were the few days without gluten enough to throw off my bloods?

I wouldn't think so. What was the result of that draw?