Seeing gastroenterologist tomorrow, advice would be appreciated

[meg-c]

Hi, everyone. I haven't been diagnosed with Celiac disease, so I hope it's okay for me to post here.

I'm a 21-year-old female who has been struggling with some chronic symptoms for about a year now.

Out of nowhere, I started losing weight. To date, I've lost upwards of 70 pounds. I was very much overweight beforehand, and I'm now hovering at a healthy weight. The weight has seemed to plateau somewhat recently, though. I was overweight my entire life, losing weight was never easy for me... even as an athlete. I'm now very sedentary. Along with the weight loss, I'm always super tired, I've lost lots of weight, have crazy dry skin I have occasion GI problems (intermittent diarrhea and constipation), sometimes floating stools. However, the never really cause me a huge inconvenience, just a difference I've noticed in my own habits. I also do not have any worthwhile stomach pain, cramps, or vomiting.

I've never had any of my vitamin/minerals checked, but I do know that I am anemic. I have a low ferritin (13 on last check) along with a low hemoglobin, hematocrit, etc. I've been treating with an oral multivitamin with iron; my levels aren't super low, I just can't seem to bring them over the threshold into normal range. It was also recently discovered that my WBC count (specifically neutrophils) were substantially low. My doctor and I thought perhaps it was a viral illness, so we rechecked it two weeks later... still low. We also tested ANA and a couple other things that could cause it... all normal. I'm under the impression that autoimmune diseases frequently cause low WBC counts.

I had a blood test for Celiac disease preformed a long time ago. It checked both my tTG IgA and total IgA -- both were within range. I was eating gluten at the time (and I still am, no plans to stop unless I receive a proper diagnosis). I know this is not the full panel.

It may also be worth noting that both my parents have autoimmune diseases. My father had T1 diabetes and my mother had transient Graves' disease. I know that autoimmune diseases can be more likely to run in families.

I wonder if an endoscopy/colonoscopy will be recommended. This may sound crazy, but I'm worried nothing will show up. Time and time again I'm frustrated when test after test comes back negative. Not that I want a diagnosis, I'm just sick of feeling this way. I worry that my GI symptoms aren't enough to warrant it.

Any thoughts, suggestions, recommendations, or similar experiences would be greatly appreciated.

 

Thank you! 

 

 

Thank you!

[Hellodee2]

Hi Meg,

Your symptoms sound like mine before I was diagnosed except for the weight loss. My doctor thought I was bleeding internally I was so anemic.  My advice would be to keep eating gluten, get the full celiac blood panel and go from there. They did a colonoscopy on me in 2006 and it was clean so while I was still out they did an endoscope biopsy and found my villi were flat and I was getting very little nutrients from my food.

I still have a little inflammation and have been diagnosed with other afflictions but knowing I had Celiac was a blessing and a curse. You sound prepared to deal with it if you have it.  Good luck and let us know what happens. ?

[meg-c]

25 minutes ago, Hellodee2 said:

Hi Meg,

Your symptoms sound like mine before I was diagnosed except for the weight loss. My doctor thought I was bleeding internally I was so anemic.  My advice would be to keep eating gluten, get the full celiac blood panel and go from there. They did a colonoscopy on me in 2006 and it was clean so while I was still out they did an endoscope biopsy and found my villi were flat and I was getting very little nutrients from my food.

I still have a little inflammation and have been diagnosed with other afflictions but knowing I had Celiac was a blessing and a curse. You sound prepared to deal with it if you have it.  Good luck and let us know what happens. ?

Thank you so much for sharing the information. I know my anemia isn't that severe, but still not optimal. Doctors are quick to say it's normal in a young female. Ugh. 

I'll be sure to update, thanks again!

[overdramaticmel]

These sound like my symptoms before I was diagnosed this year with Graves’ disease. I also have never been officially diagnosed with celiac — worked with a naturopath and found out I can not have gluten (it makes me very sick now when I accidentally eat it). 

At any rate. Graves — very likely to have weight loss and diarrhea/loose stool. I’d consider that seeing as though it’s genetic. 

 

I was also always low on my iron and was anemic. I also had been low on vitamin D. Usually low iron and low vit D can indicate celiac. 

[meg-c]

45 minutes ago, overdramaticmel said:

These sound like my symptoms before I was diagnosed this year with Graves’ disease. I also have never been officially diagnosed with celiac — worked with a naturopath and found out I can not have gluten (it makes me very sick now when I accidentally eat it). 

At any rate. Graves — very likely to have weight loss and diarrhea/loose stool. I’d consider that seeing as though it’s genetic. 

 

I was also always low on my iron and was anemic. I also had been low on vitamin D. Usually low iron and low vit D can indicate celiac. 

Thank you for the suggestions, however thyroid was all of my doctor's first thought and it is perfectly healthy. 

[cyclinglady]

43 minutes ago, meg-c said:

Thank you for the suggestions, however thyroid was all of my doctor's first thought and it is perfectly healthy. 

Can you define healthy?  Were your thyroid antibodies tested and not just thyroid function (e.g. TSH, etc.)?  Celiac disease can develop at anyt8ne.  If it had been more than two years, get tested again and be sure the DGP and EMA IgA and IgG versions are ordered and not just the TTG?  Why?  I have Hashimoto’s (my mom has Graves),  celiac disease and I was ONLY DGP IgA positive.  If my doctor had just ordered the cheaper, but pretty effective TTG, my diagnosis would have been missed.  

As far as anemia is concerned, that is what my doctors told me,  “It is because you are a girl.”   I had to go through menopause before they took notice!  

[Gemini]

3 hours ago, meg-c said:

Hi, everyone. I haven't been diagnosed with Celiac disease, so I hope it's okay for me to post here.

I'm a 21-year-old female who has been struggling with some chronic symptoms for about a year now.

Out of nowhere, I started losing weight. To date, I've lost upwards of 70 pounds. I was very much overweight beforehand, and I'm now hovering at a healthy weight. The weight has seemed to plateau somewhat recently, though. I was overweight my entire life, losing weight was never easy for me... even as an athlete. I'm now very sedentary. Along with the weight loss, I'm always super tired, I've lost lots of weight, have crazy dry skin I have occasion GI problems (intermittent diarrhea and constipation), sometimes floating stools. However, the never really cause me a huge inconvenience, just a difference I've noticed in my own habits. I also do not have any worthwhile stomach pain, cramps, or vomiting.

Losing 70 pounds without trying is just not normal.  One of my symptoms was weight loss but I was underweight to begin with.....classic celiac.  I lost weight like you did.......without even trying and I ate like a lumberjack. 

I've never had any of my vitamin/minerals checked, but I do know that I am anemic. I have a low ferritin (13 on last check) along with a low hemoglobin, hematocrit, etc. I've been treating with an oral multivitamin with iron; my levels aren't super low, I just can't seem to bring them over the threshold into normal range. It was also recently discovered that my WBC count (specifically neutrophils) were substantially low. My doctor and I thought perhaps it was a viral illness, so we rechecked it two weeks later... still low. We also tested ANA and a couple other things that could cause it... all normal. I'm under the impression that autoimmune diseases frequently cause low WBC counts.

You do not have to be severely anemic to have celiac but your hemoglobin and hematocrit are low also and no, being anemic is not because you are female and have periods.  They have been saying that nonsense for years now.  Eventually, my anemia got so bad, I was passing out. 

As far as low white cell counts go, yes it can be caused by autoimmune disease.  I have 4 AI diseases and my white cell count has been low for years yet I am not sick all the time.

I had a blood test for Celiac disease preformed a long time ago. It checked both my tTG IgA and total IgA -- both were within range. I was eating gluten at the time (and I still am, no plans to stop unless I receive a proper diagnosis). I know this is not the full panel.

It's really important for a full Celiac panel to be run but you already know that.

It may also be worth noting that both my parents have autoimmune diseases. My father had T1 diabetes and my mother had transient Graves' disease. I know that autoimmune diseases can be more likely to run in families.

The 2 top diseases that are most associated with Celiac are Type 1 diabetes and thyroid disease.  They should both be screened for celiac also.

I wonder if an endoscopy/colonoscopy will be recommended. This may sound crazy, but I'm worried nothing will show up. Time and time again I'm frustrated when test after test comes back negative. Not that I want a diagnosis, I'm just sick of feeling this way. I worry that my GI symptoms aren't enough to warrant it.

You only need to do a Celiac panel and an endoscopy for screening.  A colonoscopy will not diagnose celiac but gastro's tend to push both tests.  It depends on how comfortable you are with the prep and the procedure but if you are looking for celiac, the colonoscopy is unnecessary.

Any thoughts, suggestions, recommendations, or similar experiences would be greatly appreciated.

You have symptoms, weight loss and anemia, plus parents with associated conditions.  Concentrate on celiac first and depending on test results, you can always do a strict dietary trial once testing is complete.  But to me, you sound like a good candidate for celiac.  Good luck with your appointment!

 

Thank you! 

 

 

Thank you!

 

[meg-c]

1 hour ago, cyclinglady said:

Can you define healthy?  Were your thyroid antibodies tested and not just thyroid function (e.g. TSH, etc.)?  Celiac disease can develop at anyt8ne.  If it had been more than two years, get tested again and be sure the DGP and EMA IgA and IgG versions are ordered and not just the TTG?  Why?  I have Hashimoto’s (my mom has Graves),  celiac disease and I was ONLY DGP IgA positive.  If my doctor had just ordered the cheaper, but pretty effective TTG, my diagnosis would have been missed.  

As far as anemia is concerned, that is what my doctors told me,  “It is because you are a girl.”   I had to go through menopause before they took notice!  

Yes, my thyroid antibodies and function were both thoroughly tested. It has not been more than two years, maybe 14 months or so. I'll be sure to ask about the full panel, though. 

Obviously I'm not post-menopausal, but I do not think my cycles are heavy enough to constitute the anemia. No change in flow, yet numbers are lower than they've ever been. 

[meg-c]

23 minutes ago, Gemini said:

 

Thank you so much for such a kind, knowledgable reply!

I hate the idea that doctors say it is normal for females to be anemic solely because of periods; if it was "normal" they wouldn't make the guidelines where they are. right?! I definitely plan on bringing that up tomorrow. My WBC count ran low-ish for quite a few months,  now back to somewhat normal range (at least on that one test). Not sure if it can fluctuate or not...

 

I had no idea those were the top two most common conditions... I'll be sure to bring that up as well. 

Definitely understand that a colonoscopy isn't necessary to diagnosis, but where I have had symptoms of unknown origin, I wonder if both could be useful (as in it picks up something other than Celiac in my lower colon). 

Thank you so much again, I really appreciate it! 

[meg-c]

On 12/13/2017 at 5:34 PM, Gemini said:

Hi, just wanted to give a quick update.

Saw the Gastro NP and she was incredible! So receptive to everything I had to say, really agreed that I had the perfect storm for Celiac. Ordered some gene blood typing (Celiac Disease HLA Typing). Also wants me to go for both an endoscopy and colonoscopy. 

 

[Gemini]

Excellent!  Sounds like you have receptive people who listen, which is not always the case.  I am sorry you have to go through all this testing but I hope you get the answers you seek.  Please let us know how it all goes and good luck!

 

[meg-c]

Just got a phone update. My Vitamin D is pretty low (18) which isn't necessarily surprising, especially during the wintertime in my location. Additionally, my HLA Typing came back positive for the DHLA DQA1*05 allele. Don't know much about this, I plan on divulging more later. Any information would be appreciated.