Confused about diagnosis

[CarieA]

I am new to all of this. I've been sick with many issues for years, headaches, anxiety, anemia, infertility, constipation, tingly hands and feet, aching joints, and doctors have treated my symptoms. We moved recently and my new Dr decided to look deeper into some of my symptoms, especially my anemia. My iron levels were critically low and I was B12 deficient. We tried oral iron for a month, and I failed. She then sent me to a hematologist and a GI thinking it is an absorption issues, or I was bleeding somewhere. In the meantime I was having such difficulty. I have struggled with constipation for over 15 years, and for the past 4-5 years random nausea and heart burn that has progressively become worse, and more recently stomach cramping and SEVERE itching on my stomach. I saw the hematologist and gastro doctors and was scheduled for an iron infusion to start getting my levels up, and a colonoscopy and EGD to check for celiac and possibly bleeding. Of course the endoscopy tests were scheduled for weeks out and I was miserable. My PCP and the PA I work with both told me try gluten free it won't hurt. So, I did...and within days I was noticing my stomach feeling better. Then I read it should be eating it before the procedure. Which was less than a week away at this point. I called the GI and he said just start eating gluten again. I did and was miserable for a week. He saw some scalloping in the duodenum, but the pathology reports showed no celiac. I'm back to gluten free and I'm doing the capsule test next week. Not sure what he's looking for now. However, we went out to eat a few days ago and I ordered our food with the gluten free sauce option. I didn't tell them it was an allergy, and I'm pretty sure they didn't use gluten free sauces. Within an hour of dinner I had a headache, I was gassy and my stomach was itching horribly. I felt horrible all day the next day, pretty much stayed on the couch and watched movies. I'm so confused on this. I would swear I have a gluten intolerance. Can anyone shed some light on this. Has anyone had a biopsy come back negative but found different results later?

[Jmg]

Hi CarieA and welcome

Did you have blood tests? Normally they'd test your blood for celiac markers prior to scheduling the endoscopy. 

Obviously no-one here can diagnose you but the symptoms you relate are suggestive of celiac orOpen Original Shared Link. The latter is what they call people who test negative for celiac but whose symptoms react to the gluten free diet. My biopsy was negative but I reacted very strongly to the gluten-free diet, so a negative test result doesn't neccesarily mean gluten isn't a problem for you. Given your positive reaction to gluten-free you may want to resume gluten-free once the testing process is completed?

It's a shame that your PCP recommended you go gluten-free prior to the endoscopy. Does your GI know you've started gluten-free again in advance of the capsule test? If not you should certainly tell him in case that could impact on the test.

 

[cyclinglady]

Welcome!

Did your GI order celiac blood tests?  This is done in conjunction with the blood tests as it is easy to miss damaged areas of the small intestine.   Here are the tests:

Open Original Shared Link

 

[CarieA]

6 hours ago, Jmg said:

Hi CarieA and welcome

Did you have blood tests? Normally they'd test your blood for celiac markers prior to scheduling the endoscopy. 

Obviously no-one here can diagnose you but the symptoms you relate are suggestive of celiac orOpen Original Shared Link. The latter is what they call people who test negative for celiac but whose symptoms react to the gluten free diet. My biopsy was negative but I reacted very strongly to the gluten-free diet, so a negative test result doesn't neccesarily mean gluten isn't a problem for you. Given your positive reaction to gluten-free you may want to resume gluten-free once the testing process is completed?

It's a shame that your PCP recommended you go gluten-free prior to the endoscopy. Does your GI know you've started gluten-free again in advance of the capsule test? If not you should certainly tell him in case that could impact on the test.

 

Thank you for the feedback. Nobody ever did the book test. Which now frustrates me. I am willing to go back to my normal diet for a few weeks and do the blood testing. I know I will be uncomfortable, but it just proves to me that I have an intolerance and if it will give me a definite answer I will take that. I see the gastro again next week to go over the capsule test. I told the nurse in was gluten free again and she said that shouldn't be a problem he isn't looking for celiac anymore. I don't know what in the heck they're looking for. The whole thing is frustrating. If I had been able to get in to have the testing done sooner I may have not switched, but I was so miserable. Then I didn't realize there was blood work to be done until just recently.

[CarieA]

6 hours ago, cyclinglady said:

Welcome!

Did your GI order celiac blood tests?  This is done in conjunction with the blood tests as it is easy to miss damaged areas of the small intestine.   Here are the tests:

Open Original Shared Link

 

Nobody ever ordered the blood test to check for celiac. I wish I had done more research before going gluten free. I may have to intentionally have to make myself sick just to get a diagnosis :-( it is so difficult dealing with multiple physicians. They say they communicate, but I work for a doctor and the communication isn't really there. I see 4 different doctors right now. Plus the one I work for has an opinion.

[Milscarl]

13 hours ago, CarieA said:

I am new to all of this. I've been sick with many issues for years, headaches, anxiety, anemia, infertility, constipation, tingly hands and feet, aching joints, and doctors have treated my symptoms. We moved recently and my new Dr decided to look deeper into some of my symptoms, especially my anemia. My iron levels were critically low and I was B12 deficient. We tried oral iron for a month, and I failed. She then sent me to a hematologist and a GI thinking it is an absorption issues, or I was bleeding somewhere. In the meantime I was having such difficulty. I have struggled with constipation for over 15 years, and for the past 4-5 years random nausea and heart burn that has progressively become worse, and more recently stomach cramping and SEVERE itching on my stomach. I saw the hematologist and gastro doctors and was scheduled for an iron infusion to start getting my levels up, and a colonoscopy and EGD to check for celiac and possibly bleeding. Of course the endoscopy tests were scheduled for weeks out and I was miserable. My PCP and the PA I work with both told me try gluten free it won't hurt. So, I did...and within days I was noticing my stomach feeling better. Then I read it should be eating it before the procedure. Which was less than a week away at this point. I called the GI and he said just start eating gluten again. I did and was miserable for a week. He saw some scalloping in the duodenum, but the pathology reports showed no celiac. I'm back to gluten free and I'm doing the capsule test next week. Not sure what he's looking for now. However, we went out to eat a few days ago and I ordered our food with the gluten free sauce option. I didn't tell them it was an allergy, and I'm pretty sure they didn't use gluten free sauces. Within an hour of dinner I had a headache, I was gassy and my stomach was itching horribly. I felt horrible all day the next day, pretty much stayed on the couch and watched movies. I'm so confused on this. I would swear I have a gluten intolerance. Can anyone shed some light on this. Has anyone had a biopsy come back negative but found different results later?

Hi.  I sympathize with you.  You sound exactly how I have been for years.  I  decided to try gluten free and have never felt so well for years. My dr sent me for a gastroscope and blood tests and of cause they came back negative as I have been gluten free for a couple of months. 

I was told to start eating it so I could have the tests again.  I only lasted 1 day eating it and everything came crashing down,  the stomach the headaches I felt like a bloated balloon. I feel like Im  going to die sometimes, so I went off it again because I don't care what the results say I know what my body is telling me.  So I know I shouldn't but I just tell people I have Celiacs because when I tell them I think I am gluten intolerant they try and get me to eat it or they make things and say its gluten free! They think I am just on another fad diet!They don't understand how miserable painful and sick you feel! Good luck with everything listen to your body and you will know if you can or can't eat gluten.

[cyclinglady]

I am so sorry Carie that your doctors are.....lame (for lack of a better description).  For a few dollars, a celiac blood panel may have helped to rule out celiac disease.  Recommending that you go gluten free is ridiculous without complete testing!  How many biopsies were even taken?  It is recommended that 4 to 6 are taken.  

It is up to you to decide if going back on gluten is worth it.  You need to be consuming it daily for 8 to 12 weeks for the blood tests and 2 to 4 weeks for the endoscopy.  I do not know if the camera would reveal anything.  I think it has for some.  Personally, my visual was fine during my endoscopy but the biopsies revealed the severe damage.  In any case, consider a second opinion from a celiac-savvy GI.  

[Jmg]

9 hours ago, CarieA said:

T Then I didn't realize there was blood work to be done until just recently.

No reason why you should! You've been ill served by the, well meaning, medical staff it seems. 

Obviously you have the capsule test to come and that may be informative. I'd take the opportunity to tell your GI that you had a very positive reaction to the gluten-free diet and see what they suggest. I'd also ask them to triple check that you've not had a celiac blood test, because it seems to me bordering on negligent that no-one did so. 

The good news is that once the diagnosis aspect is over there's nothing to stop you going gluten free if that helps you with symptoms and there's lots of good advice available here and elsewhere to reduce your chances of slipping on the diet should you do so.

Best of luck

[Gemini]

Hello Carie.......just something to think about here.  Scalloping of the duodenum can occur with undiagnosed Celiac.  The duodenum changes shape because villi are blunted or destroyed and that can change the surface tension, causing the scalloping.  It sounds like they missed the damaged spots in your intestine, which is another common problem with diagnostic testing.  It isn't 100% so that is why the biopsy being the Gold Standard is a bit of a joke.  I don't know of any other medical issues that cause scalloping but I am not a doctor.....just someone with Celiac Disease.

Make sure to have the complete panel done and after that, go strictly gluten-free regardless if they tell you otherwise.  I too had severe anemia to the point where I was passing out and low B vitamins and it took way too long for me to be diagnosed.  I actually figured it out myself and requested testing that they never offered.

Good luck!

[CarieA]

Thank you everyone for the feedback. I have postponed my capsule test until I can have a site down with the GI doctor. Every time I speak to the nurse they can't tell me squat. I'm not sure why he even has them. The nurses in the doctors office I work for are so much more helpful to patients. I may have to go back to eating gluten for a while to gain some answers since I was gluten free prior to the testing. We moved to a smaller town from Houston ,TX where doctors rushed through your appointment like you were in a fast food restaurant. Every doctor I've been to here has taken time with me except for the GI, and if he doesn't take time with me next week I will ask to see a different one and I will tell him why. We left Houston because we got so sick of everything being rushed, and I won't have my health rushed. Maybe if he had taken time with me in our first appointment he would have known how uncomfortable I was and maybe he would have told me not to make any changes to my diet...but he was in a hurry. It would be difficult to eat the things I know cause me pain, but if I can get a definite answer then it may be worth it. I've been in pain for years, what's a few more weeks :-(  I am glad I found this website and know I am not alone! Thanks again...this is somewhat difficult process when nobody around you undstands.

[squirmingitch]

Here's one recommendation for the gluten challenge.

Open Original Shared Link

Hang in there, stick to your guns & advocate for yourself. Take print outs to the doc that show him he should have had you eating gluten. Maybe he will get educated by that.

Let us know how things go please. 

BTW, we're here for you for any screaming, crying, venting or pity parties. We're also here to celebrate with you for the triumphs.