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Endoscopy-What Does The Second Biopsy Really Mean?
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I had an endoscopy 12/2013 and was diagnosed as a Celiac. I guess I was a "classic case". I actually felt better on month 4 of gluten-free but have been having some issues again. So I am due for my follow up endoscopy. I feel like it's a test I am not ready for and could fail. What are they really looking for at this point? If I don't have a perfectly healed gut, what does that mean? No more babies?

 

Also, I am trying to read through the site, but anyone up for telling me how long it took for the dry skin and leg bruising to stop? Maybe if you had hair loss, when did you get it back? (Biopsy diagnosed with T.E. 2010.) How about itchy skin? Did you heal your acid reflux? (Doc says I have two diseases, Acid Reflux and Celiac but how can Acid Reflux be a disease??? I thought it was a symptom.) Did you get pregnant? Healthy Babies?

 

Thanks for your stories and any advice you have.

 

(gluten-free, DF, SF, no oats since Jan 2014. No Gluten in body care except the occasional makeup. Not sure on cross contamination. Mixed household. Still learning.)

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I am new to this but it seems that healing is different for everyone.  Some heal faster than others do but some also had a lot more damage to begin with so they have a lot more healing to do. Some also get better for a bit and then backslide, kind of a "it gets worse before it gets better" thing.

 

Are you getting proper follow up care?  Are they checking things like thyroid and vitamin deficiencies?  My hair just stopped falling out in big clumps, but I also have problems with that when my TSH is out of range. For the acid reflux, I am still taking two different meds twice a day to battle that and thought I would try stopping, bad idea.  I have had two babies, but not easily and after multiple miscarriages. I was also undiagnosed at the time and had a mountain of other health problems.  If you are young and haven't had problems for too long hopefully you won't have the barrage of problems some of us have that waited too long for a diagnosis.

 

I have an endoscopy scheduled at one year post diagnosis, just to make sure my gut is on it's way to healing.  I don't think you have to worry about getting another one, unless the damage is worse (the only reason you're going to fail that test ).  If you share a mixed household, I would get the cc under control.  That will be a big one to hold you back in recovery.

 

Good luck and welcome to the board.

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I had an endoscopy 12/2013 and was diagnosed as a Celiac. I guess I was a "classic case". I actually felt better on month 4 of gluten-free but have been having some issues again. So I am due for my follow up endoscopy. I feel like it's a test I am not ready for and could fail. What are they really looking for at this point? If I don't have a perfectly healed gut, what does that mean? No more babies?

 

Also, I am trying to read through the site, but anyone up for telling me how long it took for the dry skin and leg bruising to stop? Maybe if you had hair loss, when did you get it back? (Biopsy diagnosed with T.E. 2010.) How about itchy skin? Did you heal your acid reflux? (Doc says I have two diseases, Acid Reflux and Celiac but how can Acid Reflux be a disease??? I thought it was a symptom.) Did you get pregnant? Healthy Babies?

 

Thanks for your stories and any advice you have.

 

(gluten-free, DF, SF, no oats since Jan 2014. No Gluten in body care except the occasional makeup. Not sure on cross contamination. Mixed household. Still learning.)

i guess if you had damage in your gut, they are looking to see if you are healing.  if you don't have a perfectly healed gut, they will be looking for improvement/other causes.  i don't know if your baby-making will be affected - i guess it depends on your body.  dry skin/leg bruising improved for me once i was gluten free for about 8 months, i think, but everyone is different.  if your gut is healing, you will be getting vitamins and nutrients that are necessary for your body to heal and rejuvenate itself, so hair loss should improve.  i don't know much about thyroid as far as personal experience.  my kids were born while i was still undiagnosed  :/  and i'm still itchy, just moisturize (ok, grease up, lolz) after showers.  :)  

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After only half a year gluten-free, don't be surprised if the still find damage.  It can take months for the autoimmune response to stop after going gluten-free - in some it can take years - and then it takes a while after that to heal up.  Hopefully they will see some improvements though.  Good luck with it.  :)

 

Bruising is often linked to a vitamin K deficiency.  Once your intestines heal, you'll absorb that better.  You might want to get your K levels tested and get K injections if it is low.  Check your platelet levels too.  Very low platelets can lead to bruising too.

 

My hair loss improved in the first few months but I also have hypothyroidism so when that would change, my hair loss would increase again.  I tend to keep my hair on the short end of things to mask the little hairs always coming back in.

 

My dry skin did not improve until I changed thyroid meds and added T3 to the mix.  At that point I was gluten-free for about 9 months so I suppose that could have played a role... but I really doubt it.

 

I never experienced acid reflux.  I hope it gets better for you.

 

I (thankfully) had no problems getting pregnant; it took 3, 1, and 7 months to get pregnant with my boys.  I had one miscarriage but it was very early on and must not have been meant to be.  All my kids were big, healthy, and full term - we were very lucky.  I was undiagnosed at the time.

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Great answers thus far...but wanted to say I also think it is a bit premature for the second endo...blood tests are normal at three and six months gluten-free, but a second endo should be at a year gluten-free to give your body a chance to heal.

Have follow up celiac antibody and nutrient tests been run yet?

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The only thing I can offer is that you are correct...acid reflux is not a disease but a symptom of an underlying condition.  You are ingesting something your body cannot digest and it wreaks havoc with your stomach.  They think everything is a disease these days.   :rolleyes:   I have a few friends who had their acid reflux go away after a time on the gluten-free diet so yes, I think if you follow a strict diet and be patient, anything can heal. 

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Are you getting proper follow up care?  Are they checking things like thyroid and vitamin deficiencies?  My hair just stopped falling out in big clumps, but I also have problems with that when my TSH is out of range. For the acid reflux, I am still taking two different meds twice a day to battle that and thought I would try stopping, bad idea.  I have had two babies, but not easily and after multiple miscarriages. I was also undiagnosed at the time and had a mountain of other health problems.  If you are young and haven't had problems for too long hopefully you won't have the barrage of problems some of us have that waited too long for a diagnosis."

 

I hope I am doing this reply thing right. :) When you say follow up care, are you referring specifically to the thyroid? I did go in and ask for a thyroid test to see if it's okay. (I have been having really cold feet, dry skin, moods, etc.) He gave me a RX to take to a lab to get tested. I have been out with a cold and trying to catch up so I haven't been. I will try to go Monday. I wanted to research to make sure he wrote it properly because I hear you have to have certain tests done or you really don't know the status of your thyroid. But I don't know what those tests should be at this point. He tested my vitamins right after diagnosis but no follow up to that.

 

I got diagnosed 37 too but I just had a baby in 2011. So I was hoping for one more. I am not sure how to begin on that path or if I would be best not to do that. Which would be sad for me. But I have a sense that I probably developed the disease in my late teens/early 20's with possible sensitivity as far back to elementary days. Hard to say how long one goes undiagnosed right if you don't have the typical signs?

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Just a little curious, since we are on the topic, has anyone ever heard of someone being told they were a celiac but it turned out to be another condition? I was reading here and seems there are some other things that may pop up the same if I understand correctly:

 

http://www.cureceliacdisease.org/archives/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease

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Just a little curious, since we are on the topic, has anyone ever heard of someone being told they were a celiac but it turned out to be another condition? I was reading here and seems there are some other things that may pop up the same if I understand correctly:

 

http://www.cureceliacdisease.org/archives/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease

Did you have blood tests run during the celiac disease diagnosis? It seems to me the confusion could be solved by requesting written copies of any lab work during that time along with written copies of BOTH the procedural and pathology reports from your endoscopy.

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I assume you had a biopsy and a celiac blood panel to confirm diagnosis?

Yes, other things can cause villi damage. I have often thought about that myself since I have a milk allergy and not just lactose intolerance (though I probably have that too because of celiac disease and my age). I, like many of the others, think that another biopsy within six months of your last biopsy is too soon. I skipped my one year and opted to wait another year.

I know that my fractures have healed (one more year to go before I get another bone scan), my anemia has resolved (that was my only symptom known at the time of my dx), and I am feeling pretty good. I still have allergies and various intolerances but those have improved.

I think that once you are healed, you should not have an issue with having more kids. I would not worry about that!

If you still have off days, consider new intolerances. I developed an intolerance to Xanthan gum that is added to gluten-free breads. My husband (who has been gluten-free for 13 years) has been eating gluten-free baked goods for years. But when I had to become gluten-free and started eating gluten-free bread, I was getting "gluten-type symptoms" (rock in stomach/twinges, etc.). (Yes, I finally got intestinal symptoms the seven weeks between my blood test and my biopsy. When my doctor told me to keep eating gluten until all testing was completed, I went a little crazy eating a loaf of bread a day and threw in cookies and cakes. It was my last hurrah, but I stupidly caused even more damage!)

So, you might be eating other foods that cause some symptoms or you are still healing from celiac disease.

Hang in there!

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Did you have blood tests run during the celiac disease diagnosis? It seems to me the confusion could be solved by requesting written copies of any lab work during that time along with written copies of BOTH the procedural and pathology reports from your endoscopy.

Lisa is right. You should always get all copies of lab results and file them away.

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I hope I am doing this reply thing right. :) When you say follow up care, are you referring specifically to the thyroid? I did go in and ask for a thyroid test to see if it's okay. (I have been having really cold feet, dry skin, moods, etc.) He gave me a RX to take to a lab to get tested. I have been out with a cold and trying to catch up so I haven't been. I will try to go Monday. I wanted to research to make sure he wrote it properly because I hear you have to have certain tests done or you really don't know the status of your thyroid. But I don't know what those tests should be at this point. He tested my vitamins right after diagnosis but no follow up to that.

 

I got diagnosed 37 too but I just had a baby in 2011. So I was hoping for one more. I am not sure how to begin on that path or if I would be best not to do that. Which would be sad for me. But I have a sense that I probably developed the disease in my late teens/early 20's with possible sensitivity as far back to elementary days. Hard to say how long one goes undiagnosed right if you don't have the typical signs?

 

The best thyroid tests (in my experience) are:

TSH - should be close to a 1 (unless you are taking a T3 med like cytomel or armor) regardless of the normal range

Free T4 and free T3 - should be in the 50-75% portion of your lab's normal reference range (if in the bottom 25%, you could be hypo)

TPO Ab - should be pretty low

Reverse T3 - should not be high (this tests is often not as helpful as the other tests)

 

The total T4 and total T3, or T4 and T3 are not as helpful tests as the free T's.  If you get to pick, get the free T's done.

 

 

Just a little curious, since we are on the topic, has anyone ever heard of someone being told they were a celiac but it turned out to be another condition? I was reading here and seems there are some other things that may pop up the same if I understand correctly:

 

http://www.cureceliacdisease.org/archives/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease

 

That list is mainly for the biopsy.  Withe the blood tests, specifically the tTG IgA test, it can be falsely positive about 5% of the time because of crohn's, colitis, diabetes, chronic liver disease, thyroiditis, or a serious infection.  These causes usually result in a weak positive. Strong positives are celiac disease..  The more specific a test is, the more likely a positive is caused by celiac disease.  The table on page 12 of this report goes through the tests: http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

Best wishes.  :)

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Just a little curious, since we are on the topic, has anyone ever heard of someone being told they were a celiac but it turned out to be another condition? I was reading here and seems there are some other things that may pop up the same if I understand correctly:

 

http://www.cureceliacdisease.org/archives/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease

 

My lab results listed several other possible causes for my intestinal damage but given I was positive on every lab test, they were pretty certain it was celiac.  My daughter's labs and biopsy came back "normal" but they are attributing her symptoms to her immune issues.

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