9 replies to this topic

[rose03]

Hello! I just had an endoscopy today to try to figure out what was causing all of my stomach problems, weight loss, etc. They mentioned before scheduling the endoscopy that they believed it could be Celiac Disease. I had a Celiac blood test done a few months back but I'm not sure what exactly the results of that were since I'm a minor and after my mom got off the phone with the doctor with the results she just said something along the lines of "she said something about 1 panel showed that it was borderline positive" or something like that. (In other words, we have no idea what the results were or what they meant so they're pretty useless to me.) Anyway, I had my endoscopy today and they gave me a paper with their findings. They're obviously not the full results but I was wondering if anyone could possibly explain the information I was given today to me. The Dr probably explained it but I was still drugged up and giddy over the fact that I could finally drink water so I don't really know what they mean at all. I've got a follow up appointment scheduled at the end of this month and they may send the results in the mail in a week or so, but I'm impatient and I want to know as much as I can as soon as possible. So here's what the paper said:

-the examined esophagus was normal.
-diffuse minimal inflamation characterized by erythema was found in the gastric body. Biopsies were taken with a cold foreceps for histology. Biopsies were taken with a cold foreceps for helicobacter pylori.
-diffused mucosal flattening was found at 2nd part of the duodenum, at 3rd part of the duodenum, and at 4th part of the duodenum. Biopsies were taken with a cold foreceps for histology.
-The exam of the duodenum was otherwise normal.

And then below in what is (I assume) supposed to be like the little summary it says "flattened mucosa was found in the duodenum, suspicious for celiac disease. This was biopsied.

So can anyone interpret any of this or will I have to wait until the actual results come in to get any idea of what any of it means? Sorry if I put too much info or said something stupid- this is my first post on here. Thanks for any help you can give me! I'm hoping for results pretty soon!

[beachbirdie]

Hello! I just had an endoscopy today to try to figure out what was causing all of my stomach problems, weight loss, etc. They mentioned before scheduling the endoscopy that they believed it could be Celiac Disease. I had a Celiac blood test done a few months back but I'm not sure what exactly the results of that were since I'm a minor and after my mom got off the phone with the doctor with the results she just said something along the lines of "she said something about 1 panel showed that it was borderline positive" or something like that.


So can anyone interpret any of this or will I have to wait until the actual results come in to get any idea of what any of it means? Sorry if I put too much info or said something stupid- this is my first post on here. Thanks for any help you can give me! I'm hoping for results pretty soon!

If your mom is willing to help you, ask her to get paper copies of all your test results. There are some good people here who can tell you more about what they mean if you post your blood test numbers and biopsy results (when you get them).

Welcome! You came to a great place for information and support!

And, you did not say anything stupid, and you did not put too much information! Great job explaining your issue!

Were you having a lot of symptoms? What was happening to you that got you to see the doctor?

There are lots of people here who know a LOT about testing and celiac, I know some of them will be along soon to welcome you and help with your questions!

[rose03]

If your mom is willing to help you, ask her to get paper copies of all your test results. There are some good people here who can tell you more about what they mean if you post your blood test numbers and biopsy results (when you get them).

Welcome! You came to a great place for information and support!

And, you did not say anything stupid, and you did not put too much information! Great job explaining your issue!

Were you having a lot of symptoms? What was happening to you that got you to see the doctor?

There are lots of people here who know a LOT about testing and celiac, I know some of them will be along soon to welcome you and help with your questions!

Thanks for the welcome and response! Unfortunately, I don't think I'll be able to get my blood test results. My mom sees no reason to get them because the tests were done months ago and my doctor said that even with the results she "didn't want me on a gluten free diet right now because I need to gain weight." (More on that later.) She just sent me to the GI doctors and they're the ones who said they thought it could be Celiac. But hopefully I get my biopsy results soon! Those should be coming in the mail so I'll be able to actually see those directly instead of going off of what my doctor told my mom and then what my mom tells me.

Now about symptoms. My main ones would be the typical stomach problems: Diarrhea, constipation, bloating, gas, all that gross stuff. I have also lost approximately 30 pounds since last May. I was a perfectly healthy weight at the beginning of last summer and now I'm extremely underweight. I haven't had a period since around that time as well(sorry, tmi). My hands and feet are always freezing and my toes seem to be numb more often than not now. My hands also get extremely red and sometimes get this really weird rash thing or something. It gets really red, dry, itchy, and it stings and burns. Not sure if that's a symptom- I think I remember reading somewhere that it was? I was having thyroid problems (hypo) but taken off of the medication when I got retested and it had gotten overactive. For the most part, that's about it. There are a few other little things that I'm not sure are related to whatever it is that I have. One being the dark circles that are under my eyes. I constantly look exhausted but I get a good 8+ hours of sleep every night and generally have no problems sleeping. I was thinking that it could be related to a vitamin deficiency or something but I really have no clue.

Anyway, thanks again for the welcome! I'm look forward to getting some answers on all of this stuff and hopefully feeling better pretty soon!

[ravenwoodglass]

I am sorry you are going through all this. The report you were given does indicate that you are likely celiac combined with your symptoms and your previous positive blood test. Did they rerun the blood test? Your levels may have been higher now than they were months ago when the test was done. If you are celiac or gluten intolerant keeping you on gluten so 'you gain weight' is really not the way to go about it. Do you have an appointment with the doctor that ran the blood tests coming up? You may be a minor but you are old enough to ask to speak to the doctor privately and get your results directly rather than second hand. With celiac a positive test is a positive test even if it is a low positive and not all the tests need to positive to be diagnosed.

[MitziG]

Your dr is not the brightest. You are most likely losing weight because of celiac. A gluten free diet will stop the weight loss and help you gain. If you cannot get a straight answer or dx from your dr, then I recommend you go gluten-free on your own. However, until you are certain any celiac tests are all done, do NOT go gluten-free. You have to be eating gluten for the results to be accurate.

[rose03]

Well, after waiting the 10 days for results to come in the mail and them never coming, my mom called my (primary- Ms. "I don't want you on the gluten free diet because I want you to gain weight.) doctor today. Apparently everything is normal. No celiac, no infections, nothing. Now I'm really getting frustrated. If I don't have Celiac and I don't have any infections or bacteria WHAT is wrong with me? Why do I have constant stomach discomfort, weight loss & inability to gain weight, elevated anxiety, a completely random, out of the blue thyroid problem (gone now, but what caused it in the first place?), red, freezing hands and feet, and everything else? All of that just doesn't happen together over the course of a year without something being wrong, does it?

I want to call my mom and ask her to call the GI doctor and have him tell/send her the results but it's not going to happen. She's already irritated with me and "all my nonsense" and she's just going to believe whatever my primary doctor says. I still have my appointment with the GI doctor at the end of the month and I'm curious to see how that'll go. At this point I'm thinking that I just have a sensitive stomach and an anxiety disorder or something and that I'm just a drama queen and it's normal to feel this way all the time.

I so wanted an answer in the endoscopy results. It's not that I want Celiac disease- I just want an answer. I mean, I know it's completely and totally crazy to be sitting here getting upset over the fact that I don't have a disease but I guess I just got so hopeful that I would get some answers. *sigh*

Sorry to bring such an old topic back up to the first page. (not quite sure if that's against forum etiquette?)I just wanted to vent.

[kareng]

Are you close to being 18? If so, you could wait and get a copy. If not, ask your mom to let you have a copy of the blood work, procedure report and pathology report. Here are two reasons for her: You are so young and if a doctor in the future wanted to see them, they might not be available any longer. Seeing the results for yourself will prove to you that you don't have Celiac. (I'm not saying you don't, just a reason to see them).

[Mnicole1981]

I feel your pain. You just want answers as to why you have been feeling so awful. I am there right now.

[pricklypear1971]

Red freezing hands and feet?

http://www.mayoclini...disease/DS00433

I'm sorry I'm not going back to read your other posts - did they test you for autoimmune thyroid antibodies?

Do you have a smart phone with a camera? When you go to the GI appt ask to read the labs and take photos of them. Trust me - it's worth making your mom mad and ticking off the doctor.

You need to ask for an explanation of WHAT is causing the damage that was found (that you typed in your first post).

I hate to say this but someone is lying to you and you are not receiving the care and consideration you need to be healthy. You need to figure out who.

[beachbirdie]

Well, after waiting the 10 days for results to come in the mail and them never coming, my mom called my (primary- Ms. "I don't want you on the gluten free diet because I want you to gain weight.) doctor today. Apparently everything is normal. No celiac, no infections, nothing. Now I'm really getting frustrated. If I don't have Celiac and I don't have any infections or bacteria WHAT is wrong with me? Why do I have constant stomach discomfort, weight loss & inability to gain weight, elevated anxiety, a completely random, out of the blue thyroid problem (gone now, but what caused it in the first place?), red, freezing hands and feet, and everything else? All of that just doesn't happen together over the course of a year without something being wrong, does it?

I want to call my mom and ask her to call the GI doctor and have him tell/send her the results but it's not going to happen. She's already irritated with me and "all my nonsense" and she's just going to believe whatever my primary doctor says. I still have my appointment with the GI doctor at the end of the month and I'm curious to see how that'll go. At this point I'm thinking that I just have a sensitive stomach and an anxiety disorder or something and that I'm just a drama queen and it's normal to feel this way all the time.

I so wanted an answer in the endoscopy results. It's not that I want Celiac disease- I just want an answer. I mean, I know it's completely and totally crazy to be sitting here getting upset over the fact that I don't have a disease but I guess I just got so hopeful that I would get some answers. *sigh*

Sorry to bring such an old topic back up to the first page. (not quite sure if that's against forum etiquette?)I just wanted to vent.

Don't worry about bumping your own topic. They always come to the top when there are new things added to the conversation. It's sometimes the only way I find my way back to something I was reading because I forget I can look in "my content", LOL.

You have a lot going on, and I think everyone in here is happy to do their best to help you!

Do you know what kind of thyroid problem you have? Did they give it a name for you? If you have one of the autoimmune thyroid problems, they can come and go for quite a while before they stabilize. I have one, Hashimoto's, and it's quite a roller-coaster while waiting for the body to kill my thyroid. I wish I'd known it is related to celiac, I'd have gone gluten-free before my thyroid was totally trashed. Your thyroid issue should have been a clue to your doc

Hopefully the GI doc won't be a dweeb and will be of some help. You obviously had a positive celiac test, and you also had intestinal damage show up in your biopsy. I really don't know what your primary doc is waiting for.