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

I Swear I Have Celiac Disease...but....


ktnhsv

Recommended Posts

Jestgar Rising Star
I would stay on the diet for at least a month and eat only whole unprocessed foods during this time. Make sure you are also staying away from dairy during this time.

I agree. Eating healthy can only be doing you good, whatever your issues are, so try to make this a permanent change, as much as you can.


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



Celiac.com Sponsor (A8-M):



  • Replies 59
  • Created
  • Last Reply
ktnhsv Newbie

I definitely want to keep eating healthy!!!! It feels fantastic, loads more energy.

Why should I stay away from dairy?

Jestgar Rising Star

Many people have difficulty digesting lactose before their villi have healed. You may or may not, but it's easier to cut out the milk for a few months. Some people use lactaid tablets if stopping dairy is too much of a challenge (but still cut back as much as possible).

jadeblue Newbie

awesome job ktnhsv!

i'm going to start gluten free, today i threw out most of my gluten. i feel so lucky to have found this website today!

keep up the great work, i'm hoping i'm as successful as you at staying away from the gluten :)

  • 3 weeks later...
ktnhsv Newbie

Well I failed miserably. :( And I feel terrible again. :(

ravenwoodglass Mentor

Well I failed miserably. :( And I feel terrible again. :(

We all have a tough time in the beginning. Do you know where it slipped in? What can we do to help?

ktnhsv Newbie

We all have a tough time in the beginning. Do you know where it slipped in? What can we do to help?

The holidays. Plus it feels hopeless, like I'm torturing myself and it probably won't help my issues. :(


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

The holidays. Plus it feels hopeless, like I'm torturing myself and it probably won't help my issues. :(

The hopeless feeling could very well be related to the gluten slip up. Gluten can and does effect many of us mentally. We can also go through withdrawl which can cause us to be irritable, weepy etc. Don't lose hope, get back on the gluten free diet and give it a good chance to help. Healing doesn't happen overnight.

Ahorsesoul Enthusiast

ktnhsv,

You will be glutened now and then. Does not matter in the long run. Eliminate what glutened you and move on. This is a all or nothing world. We do the best we can. I have not met one person who went gluten free in an hour, day or week.

It takes a long time to figure out what is in your house that will gluten you. You will finally get to where you feel better. It's well worth the effort.

Now kick your self and figure out what glutened you. If you cheated, do not do that again because you know what will happen. If you couldn't resist the special Holiday treat, learn how to make it gluten free. There is nothing that can not be made gluten free.

Hard? Yes. Get over it, it's not impossible. You can do this.

You can be in control of your life.

BigDogz Explorer

Well I failed miserably. :( And I feel terrible again. :(

If everyone on this site was honest, I'd bet 99% of us "failed miserably" at least a few times in the beginning. I know I let my cravings get the better of me 5 or 6 times before I finally learned my lesson! And what a lesson it was, too!!

I can't even remember now what it was that I'd eaten, but I sure remember the results! The first symptom hit while I was driving to work - a sudden dull headache that was quickly followed by a complete loss of the left half of my vision. I, somehow, made it safely the last 2 or 3 miles to work but by the time I made it inside the headache had escalated to an excruciating level and my left eye watered uncontrollably. It's really hard to explain in a way that doesn't make me sound like a nutcase, but I had a strange feeling that a huge electrical charge was building in my body and would discharge in a massive, violent jolt at any minute.

My supervisor was concerned and drove me to the ER. If I wasn't already a little scared, I sure was when the admitting nurse rushed me right back and told the next nurse that she was making me a "priority 1 stroke protocol". I had no idea exactly what that meant but I can tell you the word 'stroke' terrified me!

The horrendous abdominal cramps and watery diarrhea hit a short time after arriving in the ER. In the next 2 hours, I had 11 episodes of diarrhea and felt exhausted and dizzy despite the IV fluids I was being given. I wasn't sure if I should be glad I had a sympathetic doctor or worried something really bad was going on when he walked into my room to check on me while awaiting test results and announced, "God! You look horrible!"

Some time later, and after multiple tests, the doc came back and reported that my CAT scan and bloodwork were fine and that he felt I was having a "gluten-induced migraine with amaurosis fugax - a specific type of visual aura". I was told to avoid gluten (like I really wanted it after all of that!), given prescription pain meds and instructed to follow up with my own doc ASAP. The headache, feeling of being off-balanced and the visual disturbance lessened but didn't go away completely for 3 DAYS!

Interestingly, I described the feelings of an impending electrical jolt that I had experienced that day to a friend of mine and he told me that he gets a similar feeling just before he has a grand mal seizure! I've read that some people do experience gluten-induced seizures and I'm absolutely certain that I was perilously close to having one that day. I know the whole, awful experience has convinced me that no temptation is EVER worth feeling like that again!

The last thing I want to tell you is this...the longer you are gluten-free, the less difficult it seems. The cravings DO go away, especially if you attack them in little baby steps. I was a carbohydrate and Mt. Dew junkie. I knew that the caffeine and sugar were just as bad for me as the gluten, but I cut the gluten first. Once I had a handle on that, the Mt. Dew was traded for a non-caffeinated grape soda. Once I no longer missed the caffeine, I slowly eliminated the grape sodas. The key is not to try doing it all at once and don't make the changes so severe that you feel deprived. Yes, I eliminated the sugary sodas but that doesn't mean that I can't still have an occasional bowl of ice cream, serving of pudding, Reese's peanut butter cup or make a batch of gluten-free brownies. If you try to do everything at once you're going to feel overwhelmed and you're more likely to give in to temptation. The most shocking thing you will find is that, once you commit to gluten-free and start healing, food tastes SO much better!!!!

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Wheatwacked replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      34

      Blood results

    2. - Known1 replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    3. - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,411
    • Most Online (within 30 mins)
      7,748

    EBeloved
    Newest Member
    EBeloved
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Wheatwacked
    • Wheatwacked
      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine.  Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years.  Doctor recently said to not stop.  My 25(OH)D is around 200 nmol/L (80 ng/ml) but it took about six years to get there.  Increasing vitamin D also increases absorption of Calcium. A good start is 100-gram (3.5-ounce) serving of salmon,  vitamin D from 7.5 to 25 mcg (300 to 1,000 IU) but it is going to take additional vitamin D supplement to be effective.  More importantly salmon has an omega-6 to omega-3 ratio 1:10 anti-inflammatory compared to the 15:1 infammatory ratio of the typical Western diet. Vitamin D and Depression: Where is all the Sunshine?
    • Known1
      Thank you for sharing your thoughts.  I respectfully disagree.  You cherry picked a small section from the page.  I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on labeling issues or concerns with identifying these “ingredients of interest” on packaged food products in the U.S. “People with celiac disease or gluten sensitives have had to tiptoe around food, and are often forced to guess about their food options,” said FDA Commissioner Marty Makary, M.D., M.P.H. “We encourage all stakeholders to share their experiences and data to help us develop policies that will better protect Americans and support healthy food choices.” --- end quote Anyone with celiac disease is clearly a stakeholder.  The FDA is encouraging us to share our experiences along with any data to help develop future "policies that will better protect Americans and support healthy food choices".  I see this as our chance to speak up or forever hold our peace.  Like those that do not participate in elections, they are not allowed to complain.  The way I see it, if we do not participate in this request for public comment/feedback, then we should also not complain when we get ill from something labeled gluten-free. Have a blessed day ahead, Known1
    • Wheatwacked
      Here is a link to the spreadsheet I kept to track my nutrition intakes.  Maybe it will give you ideas. It is not https so browsers may flag a security warning. There is nothing to send or receive. http://doodlesnotes.net/index3.html I tracked everything I ate, used the National Nutrition Database https://www.foodrisk.org/resources/display/41 to add up my daily intake and supplemented appropriately.  It tracks about 30 nutrients at once.
    • Wheatwacked
      Hello @catnapt, That's so true.  Every person with Celiac Disease has different symptoms.  There are over 200 that it mimics.  Too many still believe that it is only a childhood disease you outgrow.  Or it's psychosomatic or simply a fad.  Idiots.  It's easy to get angry at all of them.   You just have to pick at the answers until you find the ones that work for you.  I too suffer from not being able to take the drugs that work for "everyone else".  SSRIs make me twitch ane feel like toothpicks are holding my eye open, ARBs cripple me.  Statins cause me intestinal Psuedo Obstruction.  Espresso puts me to sleep.  I counted 19 different symptoms that improved from GFD and dealing with my nutritional defecits.  I couldn't breath through my mouth until I started GFD at 64 years old.   My son was born with celiac disease, biopsy diagnosed at weaning.   So why are we the one-percenters.  Why, after being silent for so long, does it suddenly flare? There is the possibility that you have both Celiac Disease and Non Celiac Gluten Sensitivity.  NCGS was not established as a diagnosis until 1980.  NCGS is diagnost by first elimating Celiac Disease as the cause, and showing improvement on GFD.  Nothing says you can't have symptoms from both.  Wheatbelly: Total Nutrition by Dr. Davis was helpful to me. We come to the forum to share what we've learned in dealing with our own symptoms.  Maybe this will help someone. Speaking of which if you don't mind; what is your 25(OH)D vitamin D blood level?  You mentioned a mysterious Calcium issue. Vitamin D, Calcium and Iodine are closely interactive. It is not uncommon for postmenopausal women to have insufficient intake of Iodine.   (RDA): Average daily level of intake sufficient to meet the nutrient requirements of nearly all (97%–98%) healthy individuals; often used to plan nutritionally adequate diets for individuals You are a one-percenter.  You may need higher intake of some essential nutrient supplements to speed up repairing the damages.
×
×
  • 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.