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Seeking Advice - Doctor Wants To Do Endoscopy

kbh75

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kbh75 Newbie
kbh75
Posted

Hello. I am seeking advice or opinions. I am not sure I have celiac but I am starting to suspect it. At first I thought it could not be possible because I do not suffer from extreme stomach upset, but the more I researched the disease online the more I began to wonder.

Here is my brief history:

  • Graves Disease (now in remission due to RAI treatment) - diagnosed 13 years ago
  • Low B12 (diagnosed about 2 years ago) - take monthly B12 shots
  • Anemia (off and on)
  • Have in the past had low potassium and sodium
  • Consipation
  • Morning nausea and immediate need to "go"
  • General symptoms: dry skin, chronic fatigue, irratibility, low mood, forgetfulness, some hair loss, petichae on torso/back

My doctor has said that he thinks I have pernicious anemia. He said he can't figure out why my levels stay low (they aren't too bad right now at 434). He recommended an endoscopy but then said that if it confirms pernicious anemia he would not do anything different. I am not a fan of invasive medical procedures so I declined. I started looking online to see if there may be other causes of the low B12. All of them are scary, some more than others. But, I kept coming back to Celiac. But, I do not throw up, I don't often have diarrhea and I am overweight rather than underweight.

Just wondering if anyone here expreienced similar symptoms. I have inquired about the blood test and my doctor's office response was for me to come in for an appointment this Friday. I am just not sure if I am worrying over nothing or if I need to research my health issues further. I am wondering if the celiac blood test is accurate.

Any advice or suggestion would be greatly appreciated. Thank you very much.

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mommida Enthusiast
mommida
Posted

Vommiting tends to be more for Celiac children. All Celiacs are individuals with specific symptoms. Your symptoms are highly suspect of Celiac.Ihaveread reprts that at least 30% of Celiacs are overweight, but that was back in the day when the statistic for Celiacs was changing from one in 40,000 to 1 in 300 and I think now they say 1 in 100 (American population) has undiagnosed Celiac from a blind screening of the blood supply.

I suggest you go for a gold standard diagnoses with the blood panel, endoscopy, and recovery on a gluten free diet before you start the gluten free diet.

mushroom Proficient
mushroom
Posted

Constipation *(and diarrhea), dry skin, chronic fatigue, depression, irritability, brain fog, hair loss, Graves disease, low nutrient levels, weight gain (as well as weight loss), anemia (pernicious or otherwise) are all frequently associated with celiac disease. I would hope that no one experiences all symptoms of celiac or they would be a miserable wreck. Nonetheless, some do get a larger share than others. Your symptoms certainly warrant testing for celiac disease, both blood and biopsy.

Nonetheless, it is possible to have all these same symptoms and not have celiac disease, but still be intolerant of gluten -- what is known as non-celiac gluten intolerance (NCGI) for which there is no current testing available (in fact it was only recognized within the last year or two as a real medical condition). As for the accuracy of the testing, there are very few false positives, but about a 20% false negative rate. It is important to run the entire celiac panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

because you may test positive on some and negative on others. Only one positive is needed for the diagnosis. The total serum IgA is a control test to validate the other results (ensuring you are a normal IgA producer).

As for the biopsy, the small intestine is a very large area and the endoscope cannot reach most of it. So your celiac must be within reach of the scope, if it is in early stages and damage is not yet visible to the naked eye, you must hope that you are lucky and can make your doctor take enough samples (at least 6-8) to have a chance of finding it. Then you must hope that the pathologist is experienced in reading celiac slides. So yes, there are unfortunately false negatives in biopsies too.

Generally speaking you will be advised by members of this board (and by more and more doctors) that even if you test negative you should give the gluten free diet a three-month strict trial at least, and see if you notice any difference in your symptoms. You should also be tested for vitamin levels, especially b!2 which you have already covered, D, folate, and minerals potassium, magnesium, calcium, zinc and ferritin.

Welcome to the board, and do feel free to question away :)

tom Contributor
tom
Posted

Hi kbh75,

Agreeing w/ the 2 above, I think you should prepare to insist on the full celiac panel at Friday's appt.

I've missed getting what I wanted out of appts while forgetful & irritable more than once. Then I brought lists & went over how to say it & how to get conv back to what mattered to me, not to him.

The combination of tests is pretty darn accurate, but they're not perfect. With your list of known celiac symptoms, it sure seems like a good next step.

He's already looking to sched an endo, so at least you wouldn't have to talk him into that.

Good luck Friday - I wonder how quickly an endoscopy can get scheduled. gluten-free might really be the answer, but get that endo 1st.

rosetapper23 Explorer
rosetapper23
Posted

Just wanted to reiterate what was said above....and that most celiacs are, in fact, overweight rather than underweight when they finally get diagnosed. If your doctor insists you couldn't possibly have celiac because of your weight issues, you should educate him on this fact. New reports come out every day, and I'm sure he doesn't read every new article on celiac.

VeggieGal Contributor
VeggieGal
Posted

Hi, im new to this myself so nothing i can add other than im in the same position as you. I had graves disease but had rai and tt and have also had positive blood results for celiac disease (im an unlucky one too..overweight with graves!! Just not fair is it.

Im seeing consulant on saturday about having an endoscopy as im dreading it too! Good luck

tom Contributor
tom
Posted

..

He recommended an endoscopy but then said that if it confirms pernicious anemia he would not do anything different. I am not a fan of invasive medical procedures so I declined.

...

While it's natural to be apprehensive about an endoscopy, it's really REALLY no big deal.

Personally I save the phrase "invasive medical procedure" for those where the patient is cut open & something's going on inside. I had a double-hernia surgery years ago & I learned there is truly something different w/ being opened up. There's a healing period from that that doesn't exist at all from an endoscopy - that's just taking a peek along the same path food goes every day.

Time after time, people who're worried about the endoscopy come back & say it was a breeze.

Seriously, it shouldn't be called invasive imho, & any apprehension shouldn't get in the way of using it to find a path to being well again.

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kbh75 Newbie
kbh75
Posted
  • Author

Thank you all for your comments. They have been very helpful and I will make notes from them to share with my doctor Friday. I am even more suspicious of celiac after reading your comments. I agree with the last poster - the procedure is non-invasive. However, I have never had any procedure performed where I have been sedated so I am feeling very anxious over the thought of it. Thank you again!

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