Confused and scared :( Help

[kdixon]

Hi everybody. I started my journey with GI issues a year ago now. For a few days or a week at a time, about once a month, I would just be extremely sick. Awful diarrhea, sometimes a fever, extremely lethargic. After three times getting sick i went to the doctor. I was first tested and diagnosed with Cdiff. In the second “recurrence” though after I had gone to the doctor, they tested me again and told me I tested negative. I was treated again, and a third time a month later, even though we weren’t even sure what I had was Cdiff.... the third time around I had awful mood swings, deppression and anxiety that have not went away fully. Could’ve been side effects from the strong antibiotics, but I’m still suffering some days.. I’ve always had health anxiety, so you could imagine how I feel.. I always think I’m dying and it’s frustrating because I’m only 18. I’m told a lot of other symptoms I feel (racing heart, chest pains etc) are just from anxiety but I mostly feel like everybody is just writing me off as a whack job.

 

Finally I was recommended for a colonoscopy/EGD. My GI doc told me there was slight inflammation in my stomach and biopsies showed some signs of Celiac disease. This diagnosis would make some sense to me given the symptoms I have had, except for the fact I had a celiac blood panel ran before that came back “normal,” and I am not extremely sick *all* the time, I probably eat gluten every day. Now today I woke up and there’s clusters of little red pin prick dots on my thumb that run up my forearm. Of course I used Dr. Google and am convinced something is seriously wrong with me. I could only find a couple things relating them to Celiac disease. I go back for additional testing this week, but right now I am just really scared, sad and frustrated. Has anyone experienced these little red dots? They are not raised and do not itch. Thanks in advance. 

[cyclinglady]

9 minutes ago, kdixon said:

Hi everybody. I started my journey with GI issues a year ago now. For a few days or a week at a time, about once a month, I would just be extremely sick. Awful diarrhea, sometimes a fever, extremely lethargic. After three times getting sick i went to the doctor. I was first tested and diagnosed with Cdiff. In the second “recurrence” though after I had gone to the doctor, they tested me again and told me I tested negative. I was treated again, and a third time a month later, even though we weren’t even sure what I had was Cdiff.... the third time around I had awful mood swings, deppression and anxiety that have not went away fully. Could’ve been side effects from the strong antibiotics, but I’m still suffering some days.. I’ve always had health anxiety, so you could imagine how I feel.. I always think I’m dying and it’s frustrating because I’m only 18. I’m told a lot of other symptoms I feel (racing heart, chest pains etc) are just from anxiety but I mostly feel like everybody is just writing me off as a whack job.

 

Finally I was recommended for a colonoscopy/EGD. My GI doc told me there was slight inflammation in my stomach and biopsies showed some signs of Celiac disease. This diagnosis would make some sense to me given the symptoms I have had, except for the fact I had a celiac blood panel ran before that came back “normal,” and I am not extremely sick *all* the time, I probably eat gluten every day. Now today I woke up and there’s clusters of little red pin prick dots on my thumb that run up my forearm. Of course I used Dr. Google and am convinced something is seriously wrong with me. I could only find a couple things relating them to Celiac disease. I go back for additional testing this week, but right now I am just really scared, sad and frustrated. Has anyone experienced these little red dots? They are not raised and do not itch. Thanks in advance. 

Do you know that some 10% of celiacs have negative blood tests?  Do you know that doctors do not always order the full celiac panel?  You might have had only the TTG which catches most celiacs, but not me.  I test positive to only the DGP IgA.  Did you know that some celiacs are asymptomatic?  When I was luckily diagnosed, I only had anemia.  I had no gut issues at all.  I was shocked.  

Check Dr. Google to confirm what I said.   

What did your GI suggest?  A gluten free diet, I hope?  I think you will be surprised at how you many ailments will soon disappear. Celiac disease is systemic.  Malnutrition can cause all kinds of illnesses.    Give the diet time.  Most members here report tak8ng a year to feel good again.  Why?  There is a steep learning curve to the diet.  Expect setbacks, but just keep moving forward.  

Keep researching about how to keep safe at home and away.  

I wish you well!  

[ravenwoodglass]

Welcome to the board.  C-lady has given you some good info. Do read the Newbie 101 thread at the top of the Coping section as it has a lot of good info to help keep you safe. As far as those little red dots go I have them and tend to get more when I get glutened. I don't know for sure but I think they are associated with the inflammation that comes for me when glutened. I am also prone to get them if I am, for example, carrying something heavy in bags over my arm or if I sleep wrong on my arms. Those fade quickly though but the ones I get with gluten tend to stay. When glutened they appear on my abdomen and chest. They look almost like small blood blisters. If the ones you have concern you or don't fade you should have your doctor take a look at them to be on the safe side and set your mind at ease.

Once all your celiac related testing is done do be sure to give the diet a good strict try. As was mentioned celiacs can have negative blood tests but still be celiac. I am one of them and disregarding that possibility cost me many pain filled years. It is advised to drop dairy and oats at first. When you have been feeling better for a short bit add them back in one at a time to make sure you can tolerate them.

I hope you feel better soon. Do ask any questions you need to ask. There are a lot of kind and knowledgeable folks here willing to help.

[DevilGluten]

Seems this is fairly common.  I am new here too... just diagnosed last week after 13+ years of ridiculous symptoms all over the body (red bumps included).  I was blood tested as late as last year for celiac as part of my normal physical and it came back negative.  But the recent biopsy I had from my endoscopy showed celiac, and that is supposedly the more definitive test.  My regular doctor said that it is possible that I could have tested negative if I had a particularly light gluten week that week.. not sure if that is accurate or not.  But both he and my GI doctor are sending me back for the full blood screening this week to confirm.  If it comes back negative, not sure what to do there.

But on Friday and Saturday this week I cut out the gluten and by last night I was already noticing a difference.  For once, no daily headache and pleurissy.  But I ate a couple of hoagies today because if I get the test tomorrow, now I got it in my head that if I don't eat gluten then test will come back negative.  And I want to know for sure.  So I loaded up on some gluten today and I now have a crappy headache.  Blah.  

So don't always trust the blood test.  Follow up with the full panel (it is 7 tests they are sending me for) and see what happens.

 

 

[squirmingitch]

You have to be eating gluten every single day

EVERY SINGLE DAY

EVERY SINGLE DAY

or you risk a false negative on the blood tests OR the endoscopy.

You can't go off gluten & then "load up" a day or 2 before the tests!