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Self-Glutening :(

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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. 

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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.


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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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.

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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? 

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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. 


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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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. 

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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. http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

Some thoughts on NCGS:  http://celiacdisease.about.com/od/glutenintolerance/a/Gluten-Intolerance-Research.htm 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.


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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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.


 

 

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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.


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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