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

Self-Glutening :(

apple-blossom

By apple-blossom
in Coping with Celiac Disease

Recommended Posts

apple-blossom Newbie
apple-blossom
Posted

Hi, I've been trying to follow a gluten free diet for a while now after realising gluten was the cause of my gastroparesis and IBS symptoms. I self diagnosed, after trialling a gluten free diet which seemed to reduce my symptoms. 

 

The problem is I suffer from depression and sometimes end up eating gluten, despite knowing that it will take me a week to get over the subsequent effects. Sometimes it's because I miss certain foods, other times it is when I'm around friends who are eating wheaty things, other times it's when I'm feeling low and like I don't care about hurting myself with food (kinda like self harm in a way). 

 

I also have trouble believing that I need to avoid gluten, despite everything I know about my body saying otherwise. There's so many articles lately in the media saying 'Do you really need to eat gluten free?' and saying it's a fad or a pointless exercise. Alot of people (including nutritional experts) seem to think that unless you are a full Celiac (I'm gluten intolerant, but I 'failed' the Celiac test at my dr's) there's no point in avoiding gluten. It makes it hard to stick to a diet when even the experts are undermining it. I don't like people thinking I'm fussy or having to make a special effort for me when I eat with them...I have social anxiety and anything that draws attention makes me uncomfortable, so I'm likely to try and fit in with what others are doing (to my detriment). 

 

I want to do the best for myself. I know I feel so much better when I consistently avoid gluten - but I let things creep in for whatever reason (perhaps something with a small amount in the ingredient list, and then ending up convincing myself that some bread won't hurt....)

 

I'm not expecting sympathy, I just don't know how to motivate myself when I feel so low all the time. I also feel like all my favourite foods contain gluten. 

 

I'm sitting here right now with a flare up of gastroparesis and painful bloating, wishing I'd had some self control. It's not even like I had one meal with gluten in...I've been eating it all week, getting progressively worse but ignoring it. Not sure how best to get over this glutening...food doesn't seem to be leaving my stomach at all at the moment :( Feeling really stupid right now. 

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

Celiac.com Sponsor (A8-M):


MomBTired Newbie
MomBTired
Posted

What food would you miss? I think I have filled most of my teenage celiac son's needs :rolleyes:

nvsmom Community Regular
nvsmom
Posted

Celiac specialists, like Dr Fasano, still state that non-celiac gluten sensitivity (NCGS) is very real and horrible problem.  As far as I can tell, those with NCGS have symptoms every bit as terrible as a celiac, and quite often I think they feel worse than me.  NCGS is real and the need to stay gluten-free is just as strong as for a celiac. If you eat gluten you impact your health and feel poorly. No, your intestines aren't damaged but that is not the main cause of many of the symptoms anyways.

 

NCGS is very real.  Don't let yourself, or others, minimize the negative impact it can have on quality of life!

 

Anxiety is often a symptom of gluten sensitivities, I think it is almost as common as IBS-like symptoms.  Sadly, anxiety is often slow to improve.   You may have to stay 100% gluten-free for a good 6 months or so before you see any change.  If you can commit to the gluten-free diet, I bet you'll see improvements around 6 months or so in.  Plus, by then the diet will be much easier to manage.  The first few months are quite hard but remind yourself that it does get easier. It really does.

 

Best wishes.

Jays911 Contributor
Jays911
Posted

All I can tell you is that, after what I suspect were years of undiagnosed celiac (now confirmed), my life has improved Immensely. My years of depression and worry are gone. My body glows, and my family is so relieved. Do I miss crusty bread? Sure, but there are plenty of options. Life isn't perfect, but take the path. You will not regret it.

apple-blossom Newbie
apple-blossom
Posted
  • Author

Thanks for the supportive replies, I've been feeling quite isolated with this. 

 

It's good to know that people do take NSGS seriously -- I know for sure that it has a huge effect on me, but the niggling doubts can lead me astray. I'm not the most headstrong of people right now, but I've decided I have to start prioritising my health if I don't want to suffer anymore. I know this is real. This is real! Thanking the stars that I found some leftover Domperidone last night to help my stomach get back into action. Still feel rotten but on the way up I hope. 

 

I think I'm going to have to start label reading like the best of them. Just discovered last night that my humble Marmite is not considered gluten free...why did I not know this? Basic errors. Will be donating some food I think.

 

In response to the question about food I miss - it's the slightly predictable ghost of bread that haunts me. And I've noticed that quite a few gluten free breads (or at least the ones I've tried) give me similar feelings to when I eat gluten. I don't know why? I'm not sure if I'm intolerant to eggs which are in a lot of the gluten-free breads....dairy is also a no no it seems. 

 

One last question. What do you do when the craving beast looms? How do you deal with it? 

ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome to the board. What celiac testing have you had done? Some doctors don't do a complete panel with the blood work and some GIs will only do one biopsy and if damage is patchy it can be missed. Let us know what tests were done and we can tell you if you should get more testing. That said NCGS is just as serious as celiac and whether you want to persue further testing is up to you.

If you cheat frequently that could be contributing to your depression. Some of us will have depression and anxiety as part of our gluten related symptoms. If that is the case for you it is creating a vicious circle with gluten triggering the depression and then the depression causing you to not care that you are hurting yourself by eating it so you eat gluten and that triggers more depression which then causes you to not care and eat more gluten which.....well you get the idea. 

MomBTired Newbie
MomBTired
Posted

Have you had full allergy tests done? My son doesn't like packaged gluten free bread so it's the only really homemade, pain in the butt thing we make. There are so many ingredients but when it is done, half the loaf disappears magically.

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

Celiac.com Sponsor (A8-M):


apple-blossom Newbie
apple-blossom
Posted
  • Author

I haven't had any tests apart from a basic Celiac test at the doctor, maybe five or more years ago. I have no idea what markers they were checking. 

 

I was also wondering if there's anything I can take for the pain. My stomach is giving me terrible indigestion pains whenever I try to eat something today. Antacids don't work on me. 

MomBTired Newbie
MomBTired
Posted

You really need to see an allergist and gastroenterologist

nvsmom Community Regular
nvsmom
Posted

I haven't had any tests apart from a basic Celiac test at the doctor, maybe five or more years ago. I have no idea what markers they were checking. 

 

I was also wondering if there's anything I can take for the pain. My stomach is giving me terrible indigestion pains whenever I try to eat something today. Antacids don't work on me. 

 

The most common celiac disease test is the tissue transglutamine immunoglobulin A (tTG IgA). It can miss up to 25% of celiacs so running as many tests as possible is helpful.

These are all the tests:

  • tTG IgA and tTG IgG
  • DGP IgA and DGP igG  (deaminated gliadin peptides)
  • EME IgA (endomysila antibodies)
  • total serum IgA (control test)
  • AGA IgA and AGA IgG (anti-gliadin antibodies) - older and less reliable tests largely replaced by the DGP tests

Take a look at this report (page 12) and you can see how sensitive the tests are. Open Original Shared Link

 

Some thoughts on NCGS:  Open Original Shared Link It appears to be very real although some doctors dispute it... 

 

Some people have problems with the soy, corn, Xantham gum or guar gum in gluten-free foods.  That could be causing your GI issues.

 

Hope you feel better.

kareng Grand Master
kareng
Posted

And... Just because you didn't have Celiac 5 years ago .... Doesn't mean you don't have it now.

apple-blossom Newbie
apple-blossom
Posted
  • Author

I guess I don't want to have to keep eating wheat for the test... :( Is that the only way to get a proper result?

kareng Grand Master
kareng
Posted

I guess I don't want to have to keep eating wheat for the test... :( Is that the only way to get a proper result?

 

Yes.  You must be eating gluten to test for Celiac.

 

"Trying to follow a gluten-free diet" is fine if you don't have Celiac.  If you actually have Celiac, you will never get well, and likely get worse, if you are only partially gluten-free.  If having a diagnosis is what you need to force yourself to be gluten-free, then you may need to get tested.

nvsmom Community Regular
nvsmom
Posted

Ditto Kareng.  If you want to test, you should be eating gluten prior to the test.  If you choose to skip the test, stay gluten-free like a celaic would. No cheats. No letting your vigilance slacken, which would probably involve eating out less than many people do.

 

Best wishes in whatever you decide to do.

Archived

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

Go to topic listing

  • 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. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen...
    2. Scott Adams
      - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that y...
    3. Scott Adams
      - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid mul...
    4. Scott Adams
      - Scott Adams commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      2

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

      Better to know late than never, and it is too bad they did not test you for it earlier!
    5. Scott Adams
      0

      Koikoi Trading Inc., Issues Allergy Alert on Undeclared Wheat and Sesame in FU ZHOU FISH BALL

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,323
    • Most Online (within 30 mins)
      7,748
    bttyknight83
    Newest Member
    bttyknight83
    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

    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      IBS-D vs Celiac

      By Scott Adams · Posted

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Question

      By Scott Adams · Posted

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
×
×
  • 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.