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My Doctor Diagnosed Me Without A Biopsy?


BeccaM

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BeccaM Rookie

Hello All-

I have posted before explaining my situation. I am a cancer survivor who for ten years has been dealing with pain, nausea, osteoporosis, neuropathy, diarrhea etc.... The doctors had blammed it all on the treatments (chemo, radiation) and now I finally have a GI doctor who just diagnosed me with Celiac.

He said that I am "Clinically Celiac". He doesn't feel like he needs to do a biopsy. My blood work was so borderline low before, and after a while on the gluten-free diet, it was fantastic. I mean, my white count which always hovers around 2.2 (normal is 5-10) was up to 3.5. Pretty cool!! He found that my actual celiac tests were not positive, but he said that it was because I had been gluten free for a while. He wants me to just try a gluten diet for a week or two to "firm up" the diagnosis. He said that if I feel awful on gluten, then we will know for sure.

Anyone else diagnosed with out the biopsy?

Thanks in advance.

-Becca


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nettiebeads Apprentice
Anyone else diagnosed with out the biopsy?

Thanks in advance.

-Becca

Ooh, my kind of dr. If your body feels better withouth gluten, then you have ipso facto celiac. My dr. dx'd me w/o bloodwork or biopsy. It's called the diet challenge and is a very viable diagnostic tool. I'm glad you have a dr. that is taking into consideration everything you've been through and is paying attention to what your body is telling you. Try the diet challenge under your dr's direction. If you feel better, then continue. If not, then he may have to find other avenues to explore, but it sounds like he's on the right track.

penguin Community Regular
Anyone else diagnosed with out the biopsy?

Thanks in advance.

-Becca

Only my IgG was high on my blood test, so my dr put me on a gluten-free diet to see if it works. If it works, I have it, if it doesn't I don't. I've said this before, but she's taking the :huh:duh :huh: approach. She's also kind of apprehensive, though, she's waiting until she sees my records from my GI doc in AR, since he did an endoscopy...She also doesn't want to do an endo if possible, since it's so invasive :P

Guest nini

I was dx'ed without a biopsy. My blood test levels were so high that he said that there was no doubt about it... Also since my health improved dramatically on the gluten free diet he said that I most definitely had celiac and the only reason to do the biopsy was if I was not improving on the diet.

CMCM Rising Star

There seem to be a number of doctors/researchers who are pushing for the elimination of the biopsy as the main diagnostic tool. Blood tests can be unreliable. Enterolab's stool tests claim to have a much greater diagnostic capability, but that has not be accepted yet by the broader medical community (unfortunately!!). There may be occasional reasons for the biopsy, but once a suspicion of celiac is there, the gluten free diet seems a better indicator of diagnosis. The diet is the only treatment anyway, and how hard is it to do the diet for awhile and see how it goes?

VydorScope Proficient

Heck I was diagnosed with TWO non-postive bisopy's. Be happy and gald that you got a doc that understands celiac disease well enough to skip the UNRELIABLE biospy. :)

mouse Enthusiast

I was diagnosed without a biopsy. I had not ingested ANYTHING (including water, which I threw up) in the nine days prior to the blood test. Totally dehydrated and massive weight loss. The month prior to the test I had very little sustenance. When the light bulb went off in my GP's head for celiac disease, I probably had very little gluten in my body. The test came back slightly elevated and he still diagnosed celiac disease. He said I was far to sick to go through the biopsy and I certainly did not push it. The blisters on my hands disappeared and I could not believe the dramatic change the diet made in my health.


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ravenwoodglass Mentor
Hello All-

I have posted before explaining my situation. I am a cancer survivor who for ten years has been dealing with pain, nausea, osteoporosis, neuropathy, diarrhea etc.... The doctors had blammed it all on the treatments (chemo, radiation) and now I finally have a GI doctor who just diagnosed me with Celiac.

He said that I am "Clinically Celiac". He doesn't feel like he needs to do a biopsy. My blood work was so borderline low before, and after a while on the gluten-free diet, it was fantastic. I mean, my white count which always hovers around 2.2 (normal is 5-10) was up to 3.5. Pretty cool!! He found that my actual celiac tests were not positive, but he said that it was because I had been gluten free for a while. He wants me to just try a gluten diet for a week or two to "firm up" the diagnosis. He said that if I feel awful on gluten, then we will know for sure.

Anyone else diagnosed with out the biopsy?

Thanks in advance.

-Becca

Both I and my DS were diagnosed through dietary changes. The gluten challange made me too sick to go to the biopsy. My DD had a biopsy that showed changes but not full blown celiac.

happygirl Collaborator

I was diagnosed without a biopsy.....had positive blood work. My dumb dr told me to go on the gluten-free diet before my biopsy....so amazingly enough, I had healed and they didn't see any blunted villi. But, I still have the Celiac diagnosis.

let-the -sun-in Newbie
Hello All-

I have posted before explaining my situation. I am a cancer survivor who for ten years has been dealing with pain, nausea, osteoporosis, neuropathy, diarrhea etc.... The doctors had blammed it all on the treatments (chemo, radiation) and now I finally have a GI doctor who just diagnosed me with Celiac.

He said that I am "Clinically Celiac". He doesn't feel like he needs to do a biopsy. My blood work was so borderline low before, and after a while on the gluten-free diet, it was fantastic. I mean, my white count which always hovers around 2.2 (normal is 5-10) was up to 3.5. Pretty cool!! He found that my actual celiac tests were not positive, but he said that it was because I had been gluten free for a while. He wants me to just try a gluten diet for a week or two to "firm up" the diagnosis. He said that if I feel awful on gluten, then we will know for sure.

Anyone else diagnosed with out the biopsy?

Thanks in advance.

-Becca

HI Becca

i too have neuropathy which was caused by malnutrion and the shortage of b12, since i went gluten free i find its not as agressive but i still have it. how do you deal with it yourself?. also my white blood count went down i was in er 2 weeks ago and they gave me a copy of the lab work and said my wbc is only1.7. i went to my regular gp who said he would not worry about it too much, but somewhere in the back of my mind i think that ,that it shouldnt be so low and its for a reason. anyway hope this diet works for you it as done wonders for me .

BeccaM Rookie

thanks so much everyone for your positive thoughts!

I have been struggling lately- I was hospitalized with what was thought to be a bowel obstruction, (would have been my third in six months) and had an allergic reaction to compazine. That was a week and a half ago, and since then, I have been feeling awful.

Just really hypoglycemic- sooo shakey and yucky. Like i'm going to faint and my heart palpitates. Does this happen to anyone else?

The doctor is having me check my blood glucose (I have a glucometer) and I have been getting the wierdest readings.. fasting -when I awake my sugar is 80, then, after I eat breakfast my sugar is 79, right before lunch it is 80, and right after eating 75. All of these are low- normal is 90-120/ So I'm wondering if there is something up with my pancreas, or if any of you are chronically hypoglycemic too.

thanks

becca

Guest Robbin

Becca, A lot of us are hypoglycemic, it sounds like you might be. Also, I have had problems with my potassium levels--too low--causes similar symptoms. I try to eat potassium-rich foods like bananas, potatoes, orange juice, etc. Take care, and keep us posted on your recovery. God bless :):)

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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
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