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Yet another "Do I need a proper diagnosis?" post

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Hello,

First post after a long hiatus of denial and self imposed gluten-ing (lost my old account details). 

I've been trying to stick to a gluten free diet on and off for 5 years now, but not managing to be strict for any significant amount of time - maybe a few months max. This is mainly because 1) I'm incredibly lazy 2) I happen to have a few 'issues' with my mental health 3) Because I get a negative result every time the Dr checks for celiac - which has been at least 3 times and although the gluten avoidance may have skewed the results on one or 2 occasions, I can't imagine the result would be different now. 

In my head, if it's not celiac then it's not serious, and if I feel in pain then that's just my problem. On the other hand, I'm extremely sensitive to gluten and every time I cheat it basically keeps me housebound for days and I don't feel right for over a week, sometimes 2. Also, I seem to get so many symptoms that I wouldn't be surprised if nutritional deficiencies are contributing to my long standing ill health (physically and mentally). It does confuse me that I'm *not* celiac, to be honest, because of how much gluten does affect me when I eat it, and the rapid onset of symptoms. I feel like I can't justify being super picky around food unless I have a celiac diagnosis, because you can't accurately diagnose sensitivity (from what I've read) even though there are better tests out there now. At the same time, I can't eat enough gluten to try and get tested anyway, despite periods of time where I consciously and actively choose to eat gluten several times a day (don't ask, I know it's incredibly stupid).  I can never manage it more than 3 days before I am too miserable for words. 

I've got to a point now (after a particularly bad self-glutening with a slice of cake) where I'm just not willing to do this to myself anymore, and maybe I should just tell friends that I'm celiac if it makes things easier. Obviously I wouldn't lie to doctors, but if I feel better in social situations saying that then maybe it's harmless?? I'm pretty secure in knowing that I'm at least extremely sensitive to gluten, and that's a good enough 'diagnosis' for me now. At the same time, I'm sort of convinced that even the tiniest bit of gluten is still harming me, and that I must be celiac, which is making the lack of a celiac diagnosis kinda troubling. In my head I'm thinking "what if I'm unknowingly damaging myself with trace gluten even when I think that I'm being gluten free?". And I'm worried that I'll start letting minor gluten containing ingredients back into my diet, just because it doesn't give me such an obvious reaction. 

I hope I don't come across as completely mad here but I don't know who to ask about this stuff. The doctor is immensely unhelpful.

Tldr; Un-diagnosed celiac with extreme gluten sensitivity (self diagnosed). Unsure whether a lack of concrete diagnosis is helpful long term but can't eat enough gluten to be tested. Planning to stay completely gluten free from this point forward because of symptoms and not try to get further tests. Is this the right way forward?

 

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NOT at all odd, there is NCGS and it is a real thing, the symptoms are mostly the same, as to damage there is a form that causes Gluten Ataxia, which is nerve and brain damage as your immune system attacks them in response to gluten. Gluten ataxia can be present in celiacs and non celiacs with a form of NCGS. SO yes your could be doing long term damage to yourself and should stick to a gluten-free diet.  Yes you can probably tell your friends your celiac or tell them your NCGS. There are many things you can say, or play with. and it does not have to be so limiting just bring your own food to events. I know there is a comprehensive post somewhere here started by one of our NCGS members. I have a small notepad of notes from when I was studying it for someone else I will post. IF your interested in Gluten ataxia I have a medical study I can dig up that compares gluten sensitivity & celiac in relations to gluten ataxia.

1. Acne, Flushed Skin, or Rashes
Non-Celiac Gluten Sensitivity can manifest itself as a chronic skin condition such as a rash, acne, or red/flushed cheeks, but these conditions could also be hormonal. On the other hand Celiac disease also has Dermatitis herpetiformic or DH, which is characterized by rashes and chronically itchy, elbows, knees, buttons, and back.

2. Distended Stomach or Bloating
A distended or bloated stomach applies especially after gluten consumption and is a fairly clear sign of gluten sensitivity. A distended stomach is also characteristic of malnutrition as well of celiac disease.

3. Diarrhea, Gas, or Constipation
These three  symptoms can simultaneously occur after eating gluten and may be a sign of intolerance because, especially the former, is a way for the body to expel harmful allergens or other substances. Often, diarrhea (frequent loose or liquid stools) occurs with gas, resulting in a “feeling of a full or tight abdomen” as put by the NFCA. Constipation, essentially the antithesis of diarrhea, is also a symptom of non-celiac gluten sensitivity and is characterized by infrequent, hard, painful bowel movements from lack of physical activity or poor diet, namely a diet high in refined carbs rich in gluten. This can be made worse if one has a magnesium deficiency, does not get though hard fiber, or drink enough water. All of which can be made worse by the feeling of bloat/gas making one feel too full to need to drink or eat high fiber foods.

4. Brain Fog or Migraines
Brain fog is a major characteristic of non-celiac gluten sensitivity. Chronic or debilitating migraines goes hand in hand with the idea of brain fog and results in depression or irritability. These again can be made worse by deficiencies, like B-vitamins.

5. Joint Pain or Numbness in Extremities
Tingling, pain, or numbness in the joints or extremities is abnormal and should be a clear sign of a health problem like gluten intolerance or celiac disease. Colloquially, this tingling is described as “pins and needles” or a limb being “asleep.” If this happens frequently for no apparent reason, it could be a sign of gluten intolerance. Again these can help be alleviated and be made worse by deficient in Magnesium, B-vitamins

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l relate. l have had very little 'powerful' cravings for gluten though, like sometimes mentioned. If l really wanted something carby l'd get a baked potato.

The only challenges for me currently will be financial and awful meal planning skills. l really think sticking to the diet is possible for you! But it is very hard to stay motivated when you begin to think that there may be another cause for your issues and in times when non gluten-free foods are not around in a pinch.

 

My plan is to stay gluten-free for around 8-12 months, and wait for a time that l can start eating gluten again for 6 weeks. If l'm not feeling too terrible, maybe 8-12, l know even then l really won't want to, but starting slow may help. If you are concerned about your doctors, there is labwork you can order and post here, then send to your doctor's office if necessary.

 

It's tricky if you cant stay on or off for long, but at least 6 weeks and some planning might be doable. Do you have anything you can use during the time you're back on a regular diet to help? l get a lot of nasal and congestion problems, and headaches which Flonase and some antihistamines can help with

 

If working with the doctors trying to get the right testing while being on a gluten containing diet stresses you out, again the walk in labs or entero labs might eliminate that anxiety and you can have your answer. It might be best to wait for a time when you know you have few stressors in your life, l'm definitely not going off the gluten-free diet for the holidays and have no time to fall apart and feel awful at work during the busy season.

 

Quite honestly l am a medical marijuana user and while still eating a gluten containing diet, it eased a lot of the symptoms. l got it for migraine and persistent eye pain and pressure, it wasnt something l'd done regularly since l was young but had forgotten how much it can return you to your baseline (or at least mask some issues while being possibly glutened, if this is the issue).

 

Plan ahead and find something that will help you personally, cope! And try to ride it out to be retested! It is important to know both for motivation and health, and so that we don't unknowingly ignore something else that might be going on.

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