Struggling

[Magda]

Hi everyone, 

 

ive been gluten free for 3 years now (presumed coeliac as have all the symptoms just I was already gluten-free when they tested)  and usually I am so disciplined in what I eat. I have been super sensitive for a while, if I eat anything cross contaminated i vomit, my face puffs up and my mood changes also b12 and folic deficient. However I don’t know what’s happened but go some reason I can suddenly eat a bit of gluten and I’m not that bad? I still get moody and puffy but I don’t vomit or anything, the thing is though I’ve become moody again from eating it but I can’t seem to get my head back on track! I’m traveling at the moment so It’s harder for me to get the proper food but still it’s not worth it as each morning I wake up feeling groggy , promise I won’t do it again and then come night time I binge. I don’t know why I’m doing it but I was hoping I could get a bit of support that might scare me back into my diet! Is there a reason I can suddenly tolerate a little bit of gluten or am I going to damage myself again? 

 

Thanks everyone ! 

 

[GFinDC]

If you have celiac disease it doesn't go away. Symptoms may change but the damage is still being done.  Have you been tested for wheat allergies?  A puffy face could be an allergy symptom.  It could be a celiac reaction too though.  Dang celiac disease symptoms can vary widely.

[cyclinglady]

Only YOU can decide if you are going to maintain the diet which means being strictly gluten free.  A hassle for sure when traveling, but that is the way it is.  Consider learning to fast to help you avoid situations where you do not have access to safe food or carry gluten-free non-perishable food with you at all times.  

While I am diagnosed, my hubby is not.  He went gluten-free 12 years before my diagnosis.  The first year was hard, but after that, he never cheated and he took great pains to avoid gluten.  It can be done.  

Consider a gluten challenge (12 weeks of consuming gluten before the blood tests — entire panel even if you pay for it yourself).  Maybe you need a formal diagnosis.  

It is choice.  Your choice.  

 

[Beverage]

Magda, I am so sorry to hear you are having so much trouble sticking with being gluten free.  You might investigate why you are either in denial or if it's a rebellion thing. 

Just go hang around someone with dementia or alzheimer's disease...  yea, that was my Mom's fate because she was not diagnosed, but we found classic symptoms all over her medical records...after she died.

I have 2 friends with Celiac's that was not diagnosed for a long time that then got fibromyalgia .... oh boy, is that a fun one to have ... NOT.  One had pain so bad she would hit her head against the wall until her head and the wall were all bloody, just to have something else to think about because the other pain was so bad.

How about my step son Type 1 Diabetes and refuses to go gluten free, and he almost scratches off his skin every few months from DH, then has to be on prednisone all the time, which is so good for you...NOT.

How about this wonderful older lady friend of mine, crazy, life loving, full of energy, always had that glint in her eyes to do something to get in trouble, always the grand kids favorite, whose sister has Celiac's, doctors never tested her in spite of classic symptoms and family history.  She finally got confirmed with Celiac's, but unfortunately also MS and I haven't seen that glint in her eyes for awhile now, shakes so bad she can't get into anymore trouble unfortunately.

Print out a list of all the things that are connected to Celiac's and carry it around with you; pull it out every time you get a crazy urge to eat gluten.  These diseases happen to real people.  Seriously, it's a no brainer.

By the way, I did not need the endoscopy to confirm I had it in order to commit to going gluten free. I didn't even have any intestinal symptoms, but my organs were failing, serious life threatening asthma, and I was dying. Finally a naturopath in 15 minutes figured out what doctors couldn't over decades.  My blood tests were positive on all the glutens, DNA test positive, and response to gluten free diet was amazing (and all the asthma GONE now). I'm 63, diagnosed at 58, probably had it since I was 19.  Don't feed your body gluten and then be messed up so bad like me.  It's been almost 5 years now since going gluten free, but because I was undiagnosed for so long, the climb back is a long one.  I'm committed to restoring my health bit by bit and making what's left of my life as healthy as possible and not tempt the fates to get those other nasty diseases. 

 

 

 

[Richard D]

I'm going to second GFinDC and say this doesn't sound like Celiac, or at least prototypical Celiac.  Celiac disease symptoms occur in the small intestine.  Usually that means you don't have any symptoms at all for a little while (for some people, 20-30 minutes, others an hour or two), but during that time, your body is working up an autoimmune reaction.  That usually means two things happen: 1) extreme unexpected fatigue from your body trying to attack itself and 2) your body doing what your body always does when something is "wrong" in your digestive track, i.e., get ready to shove everything you've eaten recently out the other end.  Sometimes that includes vomiting too, but it'd be unusual for it to happen without a delay.  But it'd be very, very unusual to get sick sometimes and not other times.  That points to misdiagnosis, i.e., you're reacting to commonly eaten with gluten but is not actually gluten.

And if you're getting immediate reactions in your stomach, i.e., your stomach feels bad within a minute or two of eating, then you much more likely are allergic to something you are eating.  Allergies are much worse than Celiac in some ways, because whereas Celiac just makes you want to die, allergies can actually kill you. 

The most common allergy for people who think they have Celiac disease is a wheat allergy, but if you can sometimes eat wheat and sometimes can't, it's probably something else.  You could for example be allergic to specific pesticides or herbicides commonly used in wheat fields, so sometimes they get washed off and sometimes they don't, depending on the brand.  You could be allergic to some other additive, like a food preservative.  I would strongly recommend writing down every single time you eat something with gluten, including brand names, and then recording when you get sick and when you don't.  Show that to a gastroenterologist, and you might figure out what's actually hurting you.

Some people, including a lot of people on this forum, will just go fully gluten free, since that does stop the problem.  If you're allergic to a pesticide used on wheat and stop eating wheat, you're going to get better, even if it's not Celiac disease causing the problem.  But if you're having trouble going fully gluten free, or you just really want to be able to eat whatever your body will let you eat, then you owe it to yourself to figure out what the problem really is.