Newly Maybe Diagnosed--? About Symptomms

[uvm87]

Hi everyone,

I am so glad I found this forum. I just was tested for Celiac and my TTg's and EMA came back positive. I can't get in to a GI for 6 weeks but am hoping to get in sooner.

Until tonight, I really didn't think I had Celiac....or that I was one of the ones without symptoms. I got tested because I went in for a physical (I went to a health fair screening and my thyroid TSH was high) and I mentioned that I usually get stomache aches when I eat out.

Since I got the results about 1 week ago, I haven't stopped reading. I have been testing myself with gluten one day and not the next. I have been feeling fine after eating gluten...even a bowl of wheat cereal and then pizza. Two mornings I had "loose stools" but basically I have felt pretty good. I exercise every day and am in pretty good shape--but I do get tired but usually think that is because I do a lot. I wasn't convinced that I had it even though I keep reading some people don't have symptoms.

But tonight I woke up in the middle of the night feeling kind of "gross"--a little queesy, a little crampy and a little bit of very slight burning in my stomache (kind of like the left side is "empty). It made me realize that I have had this "gross feeling" numerous times before in the middle of the night but I usually use my "mind power" to convince me that I am ok and not sick since I HATE to throw up. So it hit me tonight that maybe I do have symptoms of Celiac....and it scared me, too.

Now I have all these questions. Does anyone else feel like this? If I continue to eat gluten until my biopsy will I get sicker. Since my symptoms are mild, when I finally go gluten free and eat something with gluten, how will I feel?

Thanks so much. It is great to know that I have a place to ask questions....and people who understand.

[ShayFL]

First of all Welcome.

You are CELIAC based on the bloodwork alone. It is EXTREMELY rare to have a false positive and some say it isnt possible at all. All positives are positive.

You have symptoms and you have positive labs.

Here is the rub. Even when you think you do not react to gluten, your body is waging a horrible war inside of you. If you keep eating gluten and allow this internal war to continue, there will be consequences. The consequences of untreated Celiac (gluten free diet) are certain Cancers, some untreatable, Diabetes type 1 and 2, and many other auto-immune diseases like Hashimoto's (which you may already have considering your TSH).

Do you really want to risk all of those to eat gluten?

If you are the type that needs a GOLD STANDARD diagnosis, then keep eating gluten and get the endoscopy. However, keep this in mind: There are MANY false negatives with endoscopy. If they do not biopsy the spots with damage (and damage can be spotty), then they will say you do not have Celiac. So you will go on your merry way eating gluten only to be diagnosed later when they are treating you for lymphoma (happens to a lot of people sadly) for instance.

DO GET GENETIC TESTING, but here, keep in mind that even if you do not have the specific U.S. recognized Celiac genes, that you can STILL have it. Europe and other countries have identified 7 genes related to Celiac. But as usual the U.S. lags behind.

Get a good doctor to work with you on your thyroid. You are HYPOTHYROID. Get antibodies tested for thyroid. YOU NEED TO ADDRESS THIS!

When ALL is said and done, only YOU can decide if you are going to try to be as healthy as you can (not your doctors). A trial of a GLUTEN FREE diet is in order regardless of what any other tests reveal. You have POSITIVE bloodwork. As soon as the endoscopy is done, go GLUTEN FREE!!

[Amber M]

Hi, I am new to this site with a zillion questions. I figured it out myself and went off the gluten and started feeling better. My PA was testing me for everything else but celiac. When I finally figured it out, I had to go to a new MD at the local clinic as my PA left town. I ate wheat for 4 days leading up to the app. The new MD blew me off totally, saying: " If you think you have it, why spend the money for tests, just stop eating wheat and we'll call it Celiacs!!! She did not do the blood test. Consequently, I ended up in the Emergency room 4 days later. By then I had not eaten gluten for those 4 days. They went ahead and did the blood test. I have not gotten the results yet and I am wondering if it will still show up? Also, I have severe neuro symptoms. I have become my own advicate at this point. I have found new Doctors and have appointments coming up. I do not want to eat wheat again in preparation for another test. Do I have to eat gluten before the Biopsy? I am really scared right now. I always knew I had food allergies. I have been hospitalized several times, but know one ever suggested celiacs. I assumed it was Soy. I will also be seeing a Neurologist and an Allergist. Someone, Please Reply. Thanks, Amber M

[spicenator3000]

As the prevous poster posted, once positive its a positive. That's my understanding. As for the symptoms I've got maybe the most diverse that I've heard of. For me I have instant bubbles or excess saliva in my mouth, great for taste testing just not to swallow. Next comes instant gass build up in all of my intestinal track up to my stomach and esophaguss, causing abdominal pain and bloatation to the point my pants don't fit (which looks like I'm 9 months pregnant) (I hate it) and all of this causes pain/cramping and indigestion. Usually after injesting the smallest amount, my white blood cells go nuts literally, and I become constipated for at least two days if not more. Take quite a lot of Plum Green Daily tea from "The Republic of Tea" in the morning to kick start my system so I can go to the bathroom. I get dizzy, somtimes headaches, light headedness, irritability in temperment, you name it. My body has put up with it sinc I was a baby, always had strange symptoms and now my mother knows why. If you do not take this seriously, like I did 4 years ago, it can be fatal. My horrible experience was non-hodgkins lymphoma cancer in between my heart and lung. Supposedly the gluten and white blood cell fight and toxins are literally squeezed out of the intestine and into the blood stream. So essentially I'm scaring the crude out of you with the actual experienced truth in my life so you will hopefully put togeather with a dietitian a proper, healthy diet for daily life. Sounds horrible, but not half as bad as what I went though.

Take care of you, there is only one.

Hope this "inspires" you if not pushes you forward into proper diet.

Hi everyone,

I am so glad I found this forum. I just was tested for Celiac and my TTg's and EMA came back positive. I can't get in to a GI for 6 weeks but am hoping to get in sooner.

Until tonight, I really didn't think I had Celiac....or that I was one of the ones without symptoms. I got tested because I went in for a physical (I went to a health fair screening and my thyroid TSH was high) and I mentioned that I usually get stomache aches when I eat out.

Since I got the results about 1 week ago, I haven't stopped reading. I have been testing myself with gluten one day and not the next. I have been feeling fine after eating gluten...even a bowl of wheat cereal and then pizza. Two mornings I had "loose stools" but basically I have felt pretty good. I exercise every day and am in pretty good shape--but I do get tired but usually think that is because I do a lot. I wasn't convinced that I had it even though I keep reading some people don't have symptoms.

But tonight I woke up in the middle of the night feeling kind of "gross"--a little queesy, a little crampy and a little bit of very slight burning in my stomache (kind of like the left side is "empty). It made me realize that I have had this "gross feeling" numerous times before in the middle of the night but I usually use my "mind power" to convince me that I am ok and not sick since I HATE to throw up. So it hit me tonight that maybe I do have symptoms of Celiac....and it scared me, too.

Now I have all these questions. Does anyone else feel like this? If I continue to eat gluten until my biopsy will I get sicker. Since my symptoms are mild, when I finally go gluten free and eat something with gluten, how will I feel?

Thanks so much. It is great to know that I have a place to ask questions....and people who understand.