Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

My Symptoms Seem Different From Others On This Board...

jrlaird

Recommended Posts

jrlaird Rookie
jrlaird
Posted

Hello everyone!

 

I was recently diagnosed with Celiac after an upper endoscopy a few weeks ago. Up until then, I had not felt well without explanation for almost two years, starting in October of 2012. A little history before I begin:

 

Though never officially diagnosed, I am almost positive I came down with a parasite called Giardia in October 2012, which is what started all of my problems that I'm dealing with today. Though I did a stool sample to test for it and it came back negative, I am positive I had it because I had sexual contact with someone who had had it in the past (I believe it was dormant in their system even though they swore they'd gotten rid of it). My symptoms were too specific to be anything else, especially the sulfurous burps. Gross I know.

 

In an effort to get rid of it, I took a LOT of antibiotics over the course of a month until I felt like it was finally dead. I had originally taken a 1 week course of antibiotics, and felt better for a few days, only for my symptoms to return. After doing some research online, it became clear one week of antibiotics wasn't enough to kill the parasite. Much like lice, I had killed the ones that had hatched, but then the ones who hadn't hatched did, and my misery started all over again. So I did a stronger course of antibiotics for two weeks straight. After that, my giardia symptoms went away. No more lactose intolerance, no more sulfurous burps, no body odor, no extreme fatigue, and my stools started to return to a somewhat normal state. I thought I was in the clear, but I never quite felt back to normal after all that.   

 

Since that time, I have just generally not felt like my old self. I have been a little more tired and less energetic than I was before, less excited about life, and have had a host of seemingly random symptoms -- itchy skin (no rashes, just itchy skin from time to time), dry eyes, phlegm build up in the throat that would come and go, recurring mild acid reflux, brain fog, numbness/tingling in my fingers and toes, heightened sensitivity to cold weather, chronic depression, and mild abdomen discomfort. I had convinced myself I had developed a severe case of intestinal candida, because my symptoms would seem to worsen after having beer or anything with yeast in it. I thought I had wiped out all my good gut flora with the antibiotics I took to kill the parasite.

 

But my GI specialist told me candida was impossible. She suggested the endoscopy, and even though I had had blood tests (which came back negative for celiac) she took a few biopsies during the procedure and sure enough -- I have celiac.

 

My question is: has anyone had the symptoms that I have had? I feel like many people on this forum have diarrhea issues or severe stomach pains and I don't have that (fortunately). Others have said if they get glutened they are out of commission for a few days. I have been glutened once or twice since starting my gluten free diet and the only symptoms that came back were the itchy skin and the numbness/tingling in my extremities (fingers especially). And perhaps the depression was a tad worse. Are everyone's symptoms different? Is it possible I was misdiagnosed? I've noticed I have sinus issues when I drink alcohol (even when it is gluten free, like wine or tequila). Could it be an alcohol allergy?

 

I'm learning about this as I go. Any help/advice is appreciated. Thank you!

 

Jonathan 

 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


SMRI Collaborator
SMRI
Posted

Open Original Shared Link

 

I would say that your symptoms are right on target given there are so many symptoms of Celiac.  Also, a lot of your "diagnosing" is just assumptions.  Yes, long-term antibiotics can mess with your gut and you should probably take probiotics to help restore the balance, but that doesn't mean you have whatever you think you have.

 

I had D and brain fog..and now that it's gone I've noticed I had excess gas and tingling in my fingers and toes....

 

As for the alcohol thing--you know, sometimes somethings just don't agree with you for whatever reason.  That doesn't mean it's an allergy or disease, it just is.  What exact sinus symptoms do you have when you drink alcohol and how much alcohol is needed to produce those symptoms?

jrlaird Rookie
jrlaird
Posted
  • Author

It's hard to explain and rather weird.

 

A symptom I started having about four months ago (in addition to the others mentioned above) is the mucus inside my nose started to harden. It's hardened to the point that when I blow my nose, it's no longer snot that comes out but solid bits instead (boogers). I know that's gross but it's the best explanation I can provide. This seems to worsen when I drink alcohol, and as I drink, I can actually feel the inside of my nose start to harden. I also start to get itchy skin (not always but sometimes).

 

I'm ready to get on the path to healing. I am OVER some of these symptoms, as I'm sure we all are.

 

Jonathan

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,543
    • Most Online (within 30 mins)
      7,748
    yfuvhg
    Newest Member
    yfuvhg
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Protein or fat?

      By Jsingh · Posted

      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      High Cost of Gluten-Free Foods

      By Chanda Richard · Posted

      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.