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Super Confused - Now What?

bluefey

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bluefey Newbie
bluefey
Posted

for four years I have avoided gluten - I knew it made a difference in how I felt if I didn't eat it.  I would sometimes because it was all I had left - or maybe somebody's birthday - but more often than not I didn't eat it...

 

In November I had a horrible pain in my upper abdomen that radiated into my back.  It had to be gall stones -- or so my doctor said. Went for an ultrasound - but nothing was there...    So then I had a CT scan -- still nothing    So then some blood work.  It came back that I had Celiac's -- this was not a surprise - like I said I knew gluten caused me issues...

 

So my doctor sent me to a gastroentologist  for more tests...  so I had a colonoscopy and endoscopy - with a biopsy....

I never heard anything about the results so I called today.   The nurse was very confusing.  She said that there was non-specific inflammation in the biopsy, but no indication of anything other than diverticulosis.  She told me to eat more fiber.  She also told me that I needed to have blood work done to determine if I had celiacs -- I told her that I already had blood work and that it said I did have celiacs - and that is why I went for the tests.   Her response was, "oh. well just eat more fiber- lots of grain."  I asked if this meant that I could eat gluten again, and she said she didn't know, but I should avoid seeds.   She made me an appointment in 3 weeks to talk to the doctor because she couldn't respond to my questions.

 

I don't know what to do now - to gluten or not to gluten that is the question... 

 

I believe I do have celiacs -- here is why

 

#1 if I eat gluten I have pain in my stomach within 20 minutes and my feet swell

#2 I lost 60 lbs recently without trying

#3 I have this crazy rash all over my legs that wont go away

#4 If I eat gluten I get headaches

#5 I have problem with bowel movements -- food frequently flows right through me or I might be constipated for days...

 

obviously I will continue to avoid gluten...   but there is a big difference between avoiding it and scrutinizing every single thing you eat to make sure it is gluten free and worrying about cross contamination.

 

any advice from you guys would be greatly appreciated... I just don't know what to think anymore...

 

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Fenrir Community Regular
Fenrir
Posted

I would call and ask to talk directly with your GI doc because the nurse isn't explaining things properly. 

 

#1- biopsies can be negative and you can still have celiac.

#2- If you have had a tTG blood test done and it was positive, you most likely have celiac.

#3- Just because you don"t have stones does not mean you don"t have a gallbladder problem. I didn"t have stones but my gallbladder was causing me all sorts of issues. I had a HIDA scan that showed my gallbladder wasn"t functioning and was causing me pain. I personally think that celiac disease may have damaged my gallbladder. 

124chicksinger Apprentice
124chicksinger
Posted

Don't eat the gluten, and don't eat the prescribed high fiber grain diet - you can get plenty of fiber without eating the gluten containing grains.  Eat an apple - high fiber.  Pineapple, high fiber. Strawberries, high fiber.  Even tho the strawberries have "seeds" it is okay to eat them. Diverticulosis doesn't collect the seeds within the pockets and get inflamed; that is an old notion that has changed.  Nuts and seeds like pumpkin actually help to "scrape" the intestines on elimination and aid in remedying diverticulosis, that is the current notion.  The nurse has given you contradictory incorrect advise. Get on the phone with the doctor asap.  If the doctor tells you a ) you have celiacs and b ) eat plenty of grains, go get your records and go elsewhere.   As to the gluten, stop indulging in it, ever, and start looking for all the hidden gluten and avoid it as well.  It takes a mere toast crumb to cause damage to your small intestine.  Take a probiotic too.    

 

I am new to this, but my issues are similar to yours as written, tho I have a negative diagnosis for celiac.  I am gluten free 4 weeks now.  Feeling better already.

 

Certainly, you will receive more helpful answers here from these wonderful people.  Take care.

1desperateladysaved Proficient
1desperateladysaved
Posted

Greetings!

 

Were you eating gluten regularly before the endoscopy?  It is possible the gut had healed to some degree, or that the damage was missed.

 

Do you know if your nutrient levels are good?  Many people with celiac experience anemia or low vitamins B and D.

 

Look into avoiding all food without gluten and reading every label.  Celiac isn't just symptoms from eating gluten, but actual damage being done.  You likely will feel much better.

 

D

HavaneseMom Explorer
HavaneseMom
Posted

Hello,

If it were me, I would call and ask them to mail or email a copy of both your blood test results and your biopsy results. It sounds like the girl you spoke with on the phone wasn't very informed, and there may have been some terminology on the report that she didn't understand. It's always a good idea to get copies of all of your results and keep them in a file at home. It would be nice for you to know exactly what the report says sooner than the 3 weeks you have to wait for your appointment.

NoGlutenCooties Contributor
NoGlutenCooties
Posted

Welcome!

 

If you had a positive blood test and you get symptom relief from being gluten-free, then my money is on you having Celiac.

IMO... the nurse you spoke to sounds completely ignorant about Celiac and gluten intolerance. 

 

With Celiac, you cannot simply avoid "most" gluten and think that's good enough.  You need to be 100% gluten free.  No cheating.  No cross-contamination.  Otherwise your body produces antibodies and those little buggers literally kill you from the inside out.

bluefey Newbie
bluefey
Posted
  • Author

I have avoided gluten for 4 years -- after the diagnosis in November I have not had any gluten at all.  Everything I eat - even my medication is 100% gluten free - I study labels before I eat anything.  If I accidentally get gluten the pain comes back.  So, before the biopsy I had not been eating gluten for 4 months and the pain was gone.  Since then I did take medication with gluten, but I was so sick already that I didn't even think about if it had gluten.  The rash on my legs came back big time and my feet are swollen again!  The pain is back in my stomach.  I lost 14 pounds.  Pretty sure all of that is just from 10 days of medicine.   Until I went totally gluten free I was losing 4-5 lbs a week without trying.  I am still losing weight, but not as rapidly.  I take vitamins so my levels are not that bad. 

 

I don't plan to ever go back to eating gluten - no matter what the diagnosis of the biopsy says.  But if I don't have celiac then I need to find out what is causing all these problems.  I also won't be worried about cross contamination anymore.  I am just really confused why the nurse would tell me to eat lots of grain.  How does the blood work say I have celiac, but the biopsy said no?  and what is a nonspecific inflammation? 

 

 

Other than another biopsy - which cost me $1800 - how do I find out what is going on with my body?   Or should I just go by the blood work diagnosis?  just so confused now...

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NoGlutenCooties Contributor
NoGlutenCooties
Posted

IMO... if you've been gluten free and had that kind of a reaction to the reintroduction of gluten then you are definitely Celiac and there's no point in doing a gluten challenge just to do a biopsy.  And without the gluten challenge, the biopsy would be meaningless - at least from a Celiac diagnosis standpoint.  "Nonspecific inflammation" just means that there was inflammation but perhaps not enough, or not severe enough, for someone at the lab to interpret it as bad enough to confirm Celiac.

 

My suggestion is to stay 100% gluten free and see how you feel.  You've already had testing to rule out a gallbladder issue - which is good.  With a gluten free diet you may find that the pain you experienced never comes back.  But if it does - definitely follow up with a doctor.

Fenrir Community Regular
Fenrir
Posted

Yes, if you cut out gluten and felt better I would just stick to a strict gluten-free diet and see if it goes well.

124chicksinger Apprentice
124chicksinger
Posted

Its a shame the testing can't be more specific, especially the biopsies. It seems unless your intestines are riddled with damage, there is a chance the damage cannot be found.  Trust the blood work and your reaction to gluten.  As to the high fiber for the diverticulosis, you can get plenty of fiber without those "healthy whole (wheat)(rye)(barley) grains."  

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