Reintroduced Gluten For Testing... Horrible

[AnyaT]

So I've been putting off going back on gluten for fear of symptoms coming back. But as my doctors appointment is September 16th, I decided I couldn't put it off any longer. So last night I poured myself a bowl of wheat-based cereal.

 

Today was horrible. I had my first anxiety attack (near panic) since starting gluten-free, depression is back (though maybe some of that is the realization of what this means for the rest of my life), energy is low and overall I feel totally awful. I'm not sure how badly I want to go through this for another 3 weeks (at least). My partner is all ready to de-gluten the entire house tomorrow.

 

I know I'd like the certainty of a positive blood test, but how important are the blood tests? Can I just do the genetic testing and hope they show positive. Will my symptoms ease a little after I've reintroduced gluten for a few days? Any thoughts? It's hard for me to think right now, but I just can't imagine feeling like this for another 3 weeks. I'm practically non-functioning. :-(

 

Thanks for any thoughts or just support.

 

~~Anya

 

[nvsmom]

If you can't make it the required time, test once you do go gluten-free again. You never know, it might be enough to register on the blood tests.  When you do get tested, try to have the DGP and tTG tests run as they show positive the soonest (DGP especially).

 

Essentially, the blood tests just tell you whether it is celiac disease or non-celiac gluten intolerance (NCGI) that is making you sick They aren't really "needed" unless you need some sort of special accomadation that only a celiac can get. An endoscopy can also tell you this. The genetic testing can tell you if you have the genes which most celiacs share, but most of those people with DQ2 and DQ8 (I believe) don't have celiac, just a greater potential to get it. There are board member around here (not many) who have celiac disease yet they don't have the usual genes. They are just a warning to get tested really.

 

I'm afraid I don't know any tricks to help you feel better.   Good luck with it!

[Mum in Norway]

I'm im on a gluten challange now, has been for 6 weeks now, 5 days to go. I feel like s$#&, and has done the whole time. It's different from day to day, though. One day i might vomit alot and have stoace pain, another day I'll be totally woren out. Other days I'll have terible diarrhea or headace and joint pain. Some days I'll cry for no reason, and other days everything and everyone get on my nerves. Some nights I'm really afraid of going ou tto tend to the horses after dark, other days thats not a problem at all.

 

For me the motivation is mainly that my 3 year old daughter has stomace issuses that the docs can't figure out, and if I get a propper diagnosis, maybe it will be easyer to find out what is causing her pain. Also, in Norway you get financial suport if you have celiac, becaus your diet is more expensive than others. That is not so important for me, but if celiac is what is my girls problem, that will be importent for her when she is older and mooves away from home.

So I'm hoping me going throug this will make it easyer for her.

Also, if you realy have celiac, it is important to know, as you are at increesed risk of developing other autoimmune disease, and might need extra following up from your doctor.

 

Good luck to you! I know what you're going throug, and its really hard! Right now it feels like you're nevere gone be done, three weeks can seeme like a life time. But one day you'll notice that you are counting days instead of weeks, and soon you will get your answers and peace of mind.

[Soccer-Mom2405]

I am currently doing a gluten challenge and going through all the tests.  I didn't make it long, 2 weeks, before giving up and having the blood tests.  They were negative but the genetic test came back positive.  I go this morning to see a GI doctor.  Really wish now I would have waited longer but after several late night episodes, I became very frustrated and aggravated with all the issues.  I have not stopped eating gluten and like the previous poster, my symptoms vary from day to day.  The 2 symptoms consistent daily are the tiredness and brain fog.  A diagnosis isn't important to everyone but is to me.  I'm afraid if I don't have the diagnosis, I will not stick with it longer term or make it a permanent lifestyle change.

 

Good luck Anya and hope you feel better soon!!

[Chrisz1000]

I did the gluten challenge by simply not giving up gluten until after my blood test so it was relatively easy for me. Unfortunately the blood results were negative and by the time the Dr eventually told me an Endoscopy had to be done as a more reliable test, I had been gluten free for weeks. I had felt the benefits enough to decide that for the rest of my living days I need to avoid Gluten at all costs.

The effect of not having a biopsy and a positive Celiac diagnosis? Well, in some scenarios you either have Celiac or you don’t – questionnaires for example, for insurance purposes or for  prescription products - there is no option for ‘self-diagnosed’ or ‘suspected celiac’ or ‘the NHS took too long to diagnose me so I decided not to consume gluten and now its too late to prove it unless I poison myself’!!

There are some social scenarios where people ask ‘why can’t you have bread, then?’ and the inability to say “I’m a diagnosed Celiac” can be an annoyance. Of course, you simply reply with “I am gluten intolerant” but I personally would prefer to say that I am a Celiac sufferer – I KNOW I have Celiac. It sometimes plays on my mind that I’ve not had the official verdict, but the longer I go without Gluten the better I get THAT is good enough for me.

 

So… if you can bear it, have the gluten challenge followed swiftly by a Endoscopy. I am sure it will be worth it. As pointed out it may help your children or family get diagnosed or checked.

If you can’t bear it, like me (I couldn’t face going back onto Gluten after a period of gluten-free) its not the end of the world. There’s enough literature and advice out there to survive without the diagnosis. I haven’t missed the diagnosis, but I would have preferred to have it, you’ll live either way….

[eerickso]

Reading about the difficulty of going back on gluten after being gluten-free for a period of time, I'm wondering if this is what I've unknowingly done to myself. I've had vague / intermittent symptoms throughout my life. However, last December I went on a high protein diet that basically excluded grains, high carb veggies, dairy and fruit. I felt better than I had in years. When I went off the diet, I phased dairy, fruit, and grains back in and that's when my symptoms hit like a freight train. I lasted a month, just eating one serving of dairy, fruit and grains per day before seeking medical help. The symptoms exacerbated throughout this period and for the weeks afterward. I'm thankful that I've now gotten the testing behind me and am once again gluten-free but I'm wondering if my 'cleansing' myself of gluten while on the diet had something to do with the extreme reaction I had when I reintroduced it. For those of you who are doing or have done a gluten challenge, are/were your symptoms worse than when you used to be eating gluten regularly?

[Chrisz1000]

Can't answer from experience..but it is widely acknowledged here that reactions to gluten are much worse if you have spent time on a gluten free diet. The longer you go without gluten, the worse the reactions are in the event of a "glutening" accident!

[eerickso]

Makes sense based on what seems to have happened to me. Thanks!