Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Gluten Allergy (Possibly Celiac) Symptoms
0

3 posts in this topic

Hi everyone,

After 22 years of living with my gluten allergy symptoms, I was finally diagnosed at 27 with a gluten allergy/intolerance. Unfortunately I have to wait a year until I can be tested for Celiac disease because I am in the process of immigrating from Canada to the UK to Ireland. Nevertheless, for now I am on a strict gluten-free diet and it has made such a difference in my every day life.

For this post, I want to share some of the major symptoms of my gluten allergy as the doctor's have not been able to make a connection until now.

Major Symptoms:

- Constant, debilitating, stomach aches: my grandad, dad, and brother all get stomach aches, so when I used to complain of them when I was little (started when I was 5) they just wrote it off as a "sensitive" stomach and never took me to the doctors. Over time the stomaches became worse and worse and finally at 18 I went to the doctor. He told me I had an ulcer (never actually checked for anything; just guessed). After months of pills without any results, I went to a new doctor for a second opinion. Without testing (again!) this new doctor guessed I had lactose intolerance. I went off dairy, but I would still get stomach aches after eating. I went back to this doctor who basically said, "I don't know." I gave up and just dealt with it for the next 8 years.

- No energy: A constant feeling of being tired. I would wake up in the morning feeling tired. After eating, I would have to take a nap because I just felt so exhausted.

- Infrequent BMs: It was not unusual for me to go every 2-3 days. After going gluten-free, I have gone once and sometimes twice per day.

- Allodynia (skin pain): Since around the age of 20 I developed a new symptom. I began getting what I called "skin pain" on my legs and arms. It started with small patches that would hurt for no reason for a couple minutes, into massive patches over my legs or arms that would last for days. The pain felt like someone was randomly jabbing needles into my skin. It hurt to touch - even a slight breeze would be excruciating. There was no rash or obvious physical sign. I went to the doctor for this and they said I had "Allodynia" (which means skin pain) and I had to get an MRI. They couldn't find a cause and told me it was just something I was going to have to live with.

- Migraines: Since being a teenager, I would get migraines all the time. My mom would just give me a tylenol and make me go to sleep. As I've gotten older though, they have gotten worse and more frequent. Finally when I was getting them once every couple of days, I thought I should go see my doctor. This is the doctor that eventually diagnosed me with a gluten allergy. She ordered an MRI (same doctor who was treating the allodynia) and they found a cyst on the pineal gland - which is apparently quite common and according to the neurologist, has nothing to do with my migraines. I was given migraine medication.

- Joint Pain: Arthritis runs in my family with almost all of my aunts and uncles and grandparents (on one side) having it. I was told by the same doctor who ordered the MRI that it was probably the beginning stages of rheumatoid arthritis. I was given an x-ray which showed no problems with my bones yet. She also did blood work which found that I had a non-specific "autoimmune disorder."

- Weight Gain: Since around the age of 19 I have put on almost 50 pounds. All the doctors told me that it was my own fault and that I needed to eat less and exercise more. Totally reasonable. I began eating very healthily, having a lot of veggies, fruit, lean meats, nuts and seeds, as well as dairy and things like pasta and bread. I kept track of calories and started going to the gym. While I would see some results at first, I always plateaued and then gained it back. This has been the most frustrating symptom because of the pressures for girls to be "thin"; and with thin = being pretty. I felt like no matter what I did nothing worked.

All of these symptoms were dealt with by doctors separately. Whenever I went in to talk about a specific one, I would try to tell them all my issues, but they just wanted to deal with "one at a time" not realizing they were all symptoms of one problem.

Finally after 22 years, I was diagnosed with a gluten allergy after going on self-prescribed gluten-free diet, charting my symptoms, reintroducing gluten and tracking symptoms, and then giving all the information to my doctor. It sucks that the doctors didn't think of it, but I'm guessing it was because they are not used to diagnosing gluten allergies in overweight patients - usually the major symptom for doctors is being underweight.

After reading numerous articles on gluten intolerance/allergies/celiac, I also put myself on vitamin supplements: vitamin d, vitamin b, and a multivitamin. As well as digestive enzymes with food, and probiotics every night before bed.

So what has changed after being gluten-free for the past 13 days?

Side effects:

- no stomach aches since the second day

- no skin pain

- one migraine on June 5th (possibly a sinus infection)

- very little joint pain

- more energy

- more frequent BM's

Crappy (but probably good) side effects:

- spots all over back and arms, and one on hand: I've read this is a result of gluten leaving the body.

- slight weight gain of 4 pounds: this one really sucks because I'm eating only whole foods, such as chicken, veggies, tuna, almonds, and fruit; as well as some dairy and coffee. I'm hoping this is a temporary weight gain because my body is healing and starting to get better at absorbing nutrients. But I am using myfitnesspal to track calories, so I don't go overeat.

Hopefully my experiences can help those of you who are suffering from a variety of seemingly unconnected problems. And while doctors are great, I've found that a lot of trying to figure out what is wrong with me has been through trial-and-error on my own. Doctors are trained to treat symptoms and sometimes it's hard for them to make the connection between a variety of "vague" symptoms.

0

Share this post


Link to post
Share on other sites


Ads by Google:

hi, wallflower, welcome to gluten-free land - it sounds like you are having success.  pretty amazing, huh?!  pretty much the same thing happened to alot of us before anybody figured to 'connect the dots' :blink: all the seemingly unrelated symptoms that i had were resolved just by removing gluten.   get tested - i know you said you have to wait - i was sure that i was improving on gluten-free diet but wanted to make sure so as not to miss something else (my doc tested me for a bunch of other things to rule them out)  if you haven't already, you might want to read the newbie 101 thread.  many find it helpful :)  

0

Share this post


Link to post
Share on other sites

hi, wallflower, welcome to gluten-free land - it sounds like you are having success.  pretty amazing, huh?!  pretty much the same thing happened to alot of us before anybody figured to 'connect the dots' :blink: all the seemingly unrelated symptoms that i had were resolved just by removing gluten.   get tested - i know you said you have to wait - i was sure that i was improving on gluten-free diet but wanted to make sure so as not to miss something else (my doc tested me for a bunch of other things to rule them out)  if you haven't already, you might want to read the newbie 101 thread.  many find it helpful :)

Hi, thanks! I will get tested for sure. I don't like things being unresolved, but I'm moving in two weeks, then I'll be in the UK for a couple weeks, then ending up in Ireland. So I have to wait until then unfortunately. But yeah, it is amazing that all of my issues were a result of one thing that can be fixed by diet! And as much as it sucks having this, I'm so happy because I'm finally feeling better after 22 years.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,876
    • Total Posts
      919,429
  • Topics

  • Posts

    • Anyone experience brain fog like this?
      Brain fog is a common symptom.  I had a hamburger patty from a local restaurant and am suffering the effects.  Sometimes mine is bad and sometimes it is mild.  This one feels mild, provided I am not "glutened" again.  I have the exact same feelings when I am contaminated.  I actually had 2 good days this week to ony have to go back through this again.  The first day is just tired and want to sleep, but as each day goes on it seems like all I can do to concentrate and do anything.  TV is OK but for me just standing up or moving sometimes makes me dizzy.  Luckily I don't have the nausea but even sitting still I feel like I am in a swimming pool moving.  You know kind of like when you were a kid and you got in the pool or went roller skating but then got out and and you still felt like you in the pool or skating?  The anxiety and the depression is the worst.  I am taking things to help with it but it doesn't always help.  Only thing that seems to help sometimes is just going in to my room and laying there and not moving and just going to sleep.   It will pass.  Just be cautious about everything.  I have opted to let my family know that I will bring my OWN food when we have gatherings.  I don't mind being the odd man out because I am already the odd ball.  One thing I have learned and that is people mean well but mistakes happen and we are the ones who have to pay the price.   Hope you feel better soon.
    • gluten intolerance, dairy intolerance and fructose
      Look into The Paleo Approach by Sara Ballentyne, PhD.  Great resource and will probably answer your questions.  I have the same problem. You have to really read labels.  The only coconut milk I can use is an organic canned one.  Others have too many ingredients that are problematic.  For now, stay with meat and vegetables as someone else has recommended.  If rice works for you, great.  If not, winter squash is good.  The diet change is overwhelming at first but then it starts to make sense.  The one good thing about an intolerance versus allergy is the possibility of someday being able to add it back into your diet once your gut has healed.
    • Anyone experience brain fog like this?
      I went gluten free about a month ago, and was finally feeling *great* last week when wham -- my well-meaning Dad cooked me dinner and forgot to check the ingredients on the fish sauce he used. The upside of being glutened for the first time is that, after a couple weeks of feeling good, I feel like I can discern the symptoms a lot better now. I've noticed that the worst part, aside from the nausea, is the "brain fog," but I'm curious if my experience of brain fog is the same as or similar to what other people are feeling. For me, it becomes almost physically painful to concentrate on anything. If I try to read a book, or watch a TV show, it makes me feel dizzy, overwhelmed, and nauseous. For a couple days, I feel like all I can do is try to stay still and do as little as possible while I wait it out. It feels similar to anxiety, but not quite the same, and none of the usual tricks for getting through a panic attack help. Do any of you experience brain fog in a similar way? Where it basically makes you feel sick to try and concentrate on anything, even fun and relaxing things?
    • gluten intolerance, dairy intolerance and fructose
      I've never gone fructose free so can't help much with that.  But any fruit is probably a problem.  If you are serious about avoiding fructose you could do a search and print out a list of foods to avoid. http://www.mayoclinic.org/fructose-intolerance/expert-answers/faq-20058097 Yes, it very possible to have multiple food intolerance issues.  Many people have multiple food intolerances.  It might help to avoid any foods that are sweet for now.  Meat and most veggies are probably the way to go.  You may want to get some jerky to eat for snacks.  Peanuts might be ok but you'll need to verify that.  Boiled eggs are probably ok.  Most soda would be a no-no.      
    • Help
      Hi Courtney, You asked about dairy, and RMJ got it right.  Celiac disease destroys the villi lining of the small intestine.  Those villi make the lactase enzyme we need to digest dairy. Sigmoid colon thickening could be related to diverticulitis.  Which according to Wiki is a fairly common condition but doesn't always cause symptoms.  Diverticulitis can cause a problem if there is an infection though.  The sigmoid colon is part of the large intestine.  Celiac disease affects the small intestine, so celiac isn't likely involved.  I am not sure why the resident suggested celiac, unless there were some other reason to do so.  Possibly the weight loss, which could be explained by celiac disease.  Thickening of the colon may happen with Crohn's disease also.  And I'm not sure about UCD (ulcerative colitis disease) but it might cause that also, not sure https://en.wikipedia.org/wiki/Diverticulosis https://en.wikipedia.org/wiki/Sigmoid_colon http://biology-pages.info/G/GITract.html#pancreas http://www.ccfa.org/what-are-crohns-and-colitis/what-is-ulcerative-colitis/
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,912
    • Most Online
      1,763

    Newest Member
    Mamalarge
    Joined