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Given Up
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I'm 16 and been diagnosed for 18 months. I'm still not even close to being back to 'normal'. I'm very strictly Gluten free and I also can't eat Gluten free oats, barley malt extract. I'm very super sensitive even products labelled as 'Gluten Free' still make me ill. I'm beginning to lose hope, my consultant said from blood tests etc I should be better as my TTG levels are back to a normal level, but nothing is improving. I still wake up every day knowing I'm going to feel ill and exhausted. I'm doing my GCSE's at the moment and I've been struggling through that, and it's totally degrading knowing that I'll most likely be feeling like this through college as well. It's starting to affect me mentally as well now and no one even understands. Most people just assume 'oh she can't eat Gluten, that's it'. Instead of realising how much it affects people when they can't do normal things from feeling so bad. And also I know I won't do the best of my ability in my exams, but throughout life I will be up against people who have had a normal life during their exams and I will never be the best I can. And the hospital aren't helping at all, I've been told there's nothing they can do and I just have to 'deal with it'. Well I can't anymore and I've completely given up. 

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You may way to try doing more elimination diets, you could also be reacting to other things as well. A lot of people on here are sensitive and have had to give up A LOT of things. 

 

Don't give up, I know exactly how you feel. I am ill and in pain on a daily basis because of a pituitary tumor, and I am only 26. It sucks like no other to be young and not feel like everyone else. Stay strong and if you need someone to talk to, I am here, and so is everyone else on here. 

 

*hugs*

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What other things would you reccomend I eliminate from my diet:-(?

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A lot of people have cut out dairy, soy, corn, casein, nightshades, rice, nuts and some other stuff.

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Also another idea is to strip you diet down to a few foods, then slowly (and by this i mean about once a week or so) add something back in. That way you can tell whether or not that specific food is bothering you.

 

Do you take vitamin supplements? You may be vitamin deficient somewhere and that may be whats causing you to feel so bad.

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Your best is YOUR BEST regardless of what anyone else does! It is a difficult lesson to learn but an important one. Trust me, I've spent a lot of time wondering why I seemed to struggle more than my colleagues until this was uncovered. You might read The Four Agreements. It's a short, simple read but such wise life information.

Be sure to check your vitamins, toothpaste, mouthwash, shampoo, etc. If you can make it to a nutritionist who KNOWS Celiac, do so.

Many Celiacs don't make it to college. I think of all my experiences there while not understanding why I was always sick or having accidents. oy! A counselor told me to turn each negative I said about myself into two positives i.e. instead of berating myself for being late to class, acknowledge myself for GOING to class or even for being at school at all.

I don't think you're experiencing anything all of us haven't gone through at some point. Don't be too hard on yourself. Most of us would never talk to a friend the way we talk to ourselves. Learning to treat ourselves with compassion is a lifelong journey.

Keep your chin up and congratulations on your schooling. You may have to work harder but you are stronger for it. Remember that because it's true even if you don't yet realize it. Hang in there.

Blessings,

Cali

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I'm very strictly Gluten free and I also can't eat Gluten free oats, barley malt extract. I'm very super sensitive even products labelled as 'Gluten Free' still make me ill. 

 

 

Nobody should be eating alleged "gluten free" oats until they are completely healed and can see how the stuff affects them.  A significant percentage of celiacs/gluten intolerants cannot handle 'gluten free' oats.  Dietitians who suggest otherwise should have their credentials questioned.  Nobody should eat barley malt extract, period.  Gluten free codex crap can contain wheat starch, avoid that garbage like the plague, also, whoever thought wheat starch is safe and conned the regulators to let it into gluten free food should have their heads examined.   If you are extra sensitive, you should consider going grain free, higher protein, higher fat, such as a modified Paleo or SCD type diet. You can find websites on the internet for this, try looking at a sports/exercise themed site, as they are more concerned with how one feels as opposed to how much one weighs.  Avoid processed food as much as possible, and eat things such as fresh fruit, vegetables, nuts, seeds, eggs, good fats from olive oil, avocado, coconut, etc, meat, poultry, and fish.  Maybe some plain rice, or plain, uncontaminated rice cakes.  You can use gluten free "flours" made of nuts, seeds such as buckwheat, or coconut flour, and you can bake muffins in the microwave in a minute and a half.  Keep a food diary and note how you feel each day. 

 

 

....

but throughout life I will be up against people who have had a normal life during their exams and I will never be the best I can.

 

My observation during school years was that the majority of "normal" people were wasting their potential by doing anything but studying, and getting very drunk every single weekend, because they assumed their parents were always going to pick up the slack for them and then get them a job after they "graduated."   All in all, things even out.   I'm over 4 times as old as you, isn't it a bit early to consider throwing in the towel, already ?

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Hi,

 

With celiac you need to avoid all wheat, rye and barley. And as was said earlier, you should avoid oats also for a while at least.  Really you shouldn't try eating oats until you are feeling better for a couple months straight.

 

If you aren't getting better it could be either another condition affecting you or you are still eating something that is irritating your gut.  Sometimes we develop more food intolerances beyond gluten.  Soy is a big one, and it in most processed gluten-free food products, and many regular food products too.  Dairy is also a big one, and nightshades (tomatoes, potatoes, peppers eggplant).

 

If you can do a whole food only diet for a few months and no processed gluten-free foods it may help.  But remember to eliminate the common food issues like soy and dairy and nightshades.  Test the again when you are feeling better for a while.  Don't forget to check your vitamin pills and meds for gluten and soy and dairy.  At some point in your diet testing you should also eliminate all your vitamins and add them back one at a time.

 

If you are eating something that is irritating your gut on a continual basis it is no wonder you feel poorly.  The detective work to find out what that something is in your court.  No one else can figure that out for you, You will need to become a food detective.  All of our bodies are individual and we have to test our reactions to various foods to find out for ourselves.  But if you do find a food that is irritating your body and remove it the change/improvement can be significant.  Look up elimination diets and you find get some ideas.  There are quite a few threads on this forum about them.  It's worth taking the time to do a little food sleuthing/experimenting on yourself.

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Don't give up! At least you know what's wrong: something you're eating is hurting you. If I'd known that gluten was causing my depression and other issues in university, things would have gone a lot smoother.

 

As others have mentioned here, a few things you can do:

- reassess the "gluten-free"ness of anything you're eating. That includes anything labelled gluten free. It could still have been made on the same lines as gluten. Or if made in the same bakery/restaurant as gluteny things. Check all your bathroom stuff, medication, etc etc.

- with that ruled out, dairy and soy are very common as food intolerance. I'd say try cutting dairy first, then soy, then if that still isn't helping, do a full-on elimination diet to see what's going on (cut down to a few basic safe foods and add things in once a week to see if you react to it). It can take several months to feel better after going dairy/soy/whatever free.

- keep a food diary and record your symptoms.

- take your vitamins (make sure they're gluten-free, of course). B12, D, all the good brain stuff.

 

Good luck!

Hugs

Peg

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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
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