Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Maybe I'm Just Making This All Up...


hopeonthemove

Recommended Posts

hopeonthemove Newbie

Hi everyone, my name is Hope.

I'm really struggling with this topic, I have been back and forth on a gluten free diet, and I often end up wondering if I am just convincing myself that there is something wrong with me!

I have never been tested for celiac, I have a suspicion that it would show up negative anyway since my symptoms are not super intense - and I really don't want to pay for an expensive test.

A couple of years ago, I began having intense gastro-related problems, it seemed like I couldn't eat anything without having tons of bloating, cramping, and diarrhea. I did a drastic cleanse, took out all meat, sugar, caffeine, wheat, and processed foods, and I felt better immedeatley. I lost about 15 pounds, felt good, and then slowly I sort of gave in to my cravings and began to snack on desserts and foods with wheat in them. I didn't notice any bad effects! I felt fine after eating a sandwich or bagel. After I kept doing this for a week, I began to feel gross again, the bloating and gas returned, and my stomach felt all crampy and gross (especially when I ate wheat and sugar together in a dessert). I realize after writing this that it sounds pretty obvious that I should stop all those foods again, but it is such a restrictive way to live! I have a real emotional eating thing going, when I get stressed or tired or sad, I tend to head right for the foods that are "forbidden", it's some kind of a "I'm not going to follow your rules" thing I have going in my personality. I know it doesn't make logical sense, but when I'm home alone and feeling down, I have a real dilemma while standing in front of the pantry.

I think to myself:

I'm probably fine eating gluten. Maybe it's lactose or sugar!

I deserve to have this. Other people get to eat this.

I don't want to have to buy special food. I miss the way a real cookie tastes and feels!

Look, I ate a sandwich and didn't get sick. I'm imagining the whole thing.

Ugh, I don't feel well. Maybe I really do have a problem with gluten.

This goes on for a while, and I may give in to the gluten craving or I may not.

I feel stuck right now. Part of me doesn't believe there is anything wrong, and when my family gets skeptical too, it just pushes me in that direction. I'm using my lack of a huge physical response as proof that I'm mostly okay, but past experience has shown me that there probably is something going on with me and gluten. My friend has a very strong reaction, lots of sickness and all, and mine is so much more subdued.

I don't know, I guess I'm just trying to find some inspiration to pick a road and stay on it. Anyone have any ideas?


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Welcome to the board. I don't think your just making it up. Are you aware that gluten reactions are often delayed? It can take up to a week for a reaction to happen after you go back on gluten. A few folks will react right away but definately not everyone.

love2travel Mentor

Believe me, you can have wonderful gluten-free cookies that look and taste exactly like gluten cookies. Cookies are very easy to make gluten free. Not just cookies - most things, actually, so you don't have to feel deprived. I love food more than anyone I know so I understand. Not only that but I eat for every reason out there - when I am tired, when I am happy, to celebrate, out of boredom. But you can have wonderful treats on hand. You do not need to bother buying that icky processed stuff if you do not want to. Many of us don't.

You do not need to have "super intense" symptoms to have celiac. There is such a thing as silent celiac. I am one of those. I had no obvious symptoms and got tested as a family member was diagnosed as gluten intolerant. I was absolutely shocked to find I have it. But the things you describe could definitely be symptoms. There is a huge, vast, wide, cavernous range of them.

Many of us cannot tolerate lactose, especially in the beginning. I could not but after about nine months tried it again and now can eat aged cheese.

If I were you I would either a: get tested before you really are strictly off gluten (you must be consuming it when you get tested) or b: go strictly gluten free for a good month or two. But very strict. If you do indeed have celiac you could be doing some serious damage to your villi which in turn can cause a multitude of other illnesses down the road such as related cancers, diabetes... I would find out either way so you know. You need to treat your body well for it to be well! :)

Takala Enthusiast

One of the symptoms of being glutened, is the inability to think clearly that eating gluten is creating cravings to eat gluten.

Get tested. If you test positive, you have an auto immune disease, the only one which can be treated by diet. If you test negative, you may still have it and have a false negative testing, (it happens) or you are only gluten intolerant, which your symptoms point to. Either way, you will at some point have to make a decision as to whether or not a temporary sensation of eating something, is worth feeling very sick for the next 48 hours to a week, or do you display enough self control to want to feel differently.

AVR1962 Collaborator

The questions are common, I have thought them all myself......how can the person at the table next to me eat burger buns and I can't? Is this in my head? Why can my husband eat a huge plate of pasta and he has no issues? Am I imagining my own problems? Especially for those who don't have an actual diagnosis, these questions can be even more powerful.

What I know is what journey I have had and can share my own experiences with you. I do not have the gold seal diagnosis with the scope and biopsy of the intestines. I was sick sick sick and no doc could figure out why. I had known something was bothering my stomach for 2 years prior to getting real sick. I thought it was fat, then I thought it was spice and I experimented with no results. Food allergies run in my family. Finally, of all people, one of my adult daughters convinced me to ry a gluten-free diet. She practically begged me. I knew it wasn't my problem but to satisfy my daughter I agreed to 10 days, that's it......and that's all it took for me and I knew.....it was gluten, I was shocked!

I hvae been on a gluten-free diet for a year now an have had a great deal of improvement. I also found out I was having trouble with lactose, gums such as guar and xanthan, high fructose (and to anyone I was warn to stay away from high fructose, it is like poison to the body. I do not know how it is allowed in foods....ketchup, etc. Read on it!)For me though, something was still not right as my body seemed to be on fire from the inside and things were going wrong. I found myself repeatedly sick with something but was not having digestive issues. I then took all grains and refined suagr out of my diet and that was it. I knew my body was not doing well with sugar so I had been limiting it but it wasn't until I took at all grains that I noticed a big big difference in my health.

Docs are not real skilled with all of this, at least not that I have found. I tested for just about everything you can name and my tests kept coming back negative. Don't doubt what your body is trying to tell you. Why are we this way? Who knows! The fact is we are and if we want to improve out health we need to work at it. I see people eating all thes gluten-filled foods and desserts and I see they they are killing themselves. Gluten is not tolerated by something 88% of the population. More studies are showing that corn products are playing a role in our poor health and sugar is huge, bad bad stuff for the body.

I met with a friend yesterday who told me she wanted to lose 20 pounds. She is on this diet where she is to take in so many calories and take HCG drops.....for one that diet is not good if anyone has looked it up. My suggestion to her was to take all grains and suagr out of her diet and eat only lean meats, veggies and nuts. Get back to the basics of a raw foods diet. I think generally speaking people feel better. Now if I can just convince my husband!! ;-)

Annette

Kjas Newbie

The others have all made great suggestions so far.

I don't feel deprived on this diet, in fact I eat better than anyone I know health wise, with more variety and probably more enjoyment than most people have. And when I feel like pancakes, I make myself pancakes, just healthy ones that taste great (complete with raspberries and a little bit of dark chocolate) :D . It's actually been a blessing in a way, it was the kick in the butt that I needed to go back to eating the way I had been growing up.

I think you have more issues here than just gluten, I think you need to address your food issues (psychological) in general. Take a look around this website, go through the archives, they might help you.

In particular I think the following two might help, so read these two first and see if you have any lightbulb moments:

Open Original Shared Link

Open Original Shared Link

JNBunnie1 Community Regular

Basically, you will come to a point every day where you decide whether it's more important to you to be healthy than to eat the food in front of you. I personally became so incredibly ill that I will never consider eating gluten again. I'm 100% non-functional on gluten. So I don't get a choice. But aside from that, I am 95% sure that I got Celiac from my father, who died six years ago from leukemia. For me, even if I didn't get very sick, knowing that he had Celiac symptoms all his life and then died at 52 of leukemia (which untreated Celiac greatly increases your risk of getting) would keep me gluten free. I'm like a little clone of my father. Except I have girl parts!

Watching him die was the hardest thing I've ever dealt with, and I can't help but wish I could go back 20 years and make him go gluten free. So even if I didn't get sick from it, I'd be gluten free. Because I love my family and I wouldn't want to put them, or any children I may have, through that experience with me. That's my mental way of staying gluten free. Maybe you can find something like that in your experience to help motivate you. Because you most certainly do get sick off gluten. No reason to doubt that based on your description!


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



Celiac.com Sponsor (A8-M):



mamaupupup Contributor

Hi there!

Thinking of you! Quick note since I have to go get kids to bed...I had all four in our family tested. The entire Celiac Panel cost $28 WITHOUT insurance. With insurance I paid $2.80 for each of the four of us. It's been worth every single penny!!!

Thinking of you!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,162
    • Most Online (within 30 mins)
      7,748

    Jean Kemling
    Newest Member
    Jean Kemling
    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

    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...