80 replies to this topic

[SandraLAVixen]

I have asked him about that, he didn't elaborate much other than to say that I do not have an allergy to wheat or gluten (or anything), but to stay away from wheat or gluten as he thinks it would "kill" me.

But when I ask him what is the cause and what do I do, he said there was nothing more he could do as an allergist.

I have been to about 20 doctors, most of them GI specialists, none of them have any idea on what is wrong with me.

I'm worried that the endoscopy and pillcam that were done happened to be done while I was gluten free for more than a month and any damage could not be seen (also the biopsies were negative).

I just need to find what is wrong because simply gluten being the trigger is not enough, to me it's like shining a light and seeing smoke, so the cure is to turn off the light and ignore the smoke...

[pricklypear1971]

You can buy vital wheat gluten at a health food or grocery store. You can buy yeast at any grocery store (of course, the strains will differ by manufacturer).

I do not suggest you test either without sitting your butt in front of an ER when you do it, though. And write "allergic to wheat gluten and ate it" in sharpie on your forehead.

I'm not joking.

Ditto on yeast.

[GottaSki]

I just need to find what is wrong because simply gluten being the trigger is not enough, to me it's like shining a light and seeing smoke, so the cure is to turn off the light and ignore the smoke...

No - your analogy is incorrect. If gluten is the "trigger" by removing it there will not be smoke to begin with.

If you have Celiac Disease and are not making enough antibodies for current blood tests or you have NCGI, you will not improve until you remove all gluten.

You have every right to desire answers - unfortunately you may never get them. There are NO MEDICAL tests for Non-Celiac Gluten Intolerance. You may never know why your symptoms became severe in December. Continuing to eat wheat and gluten is causing you pain and other symptoms. It is possible that if you continue these symptoms will worsen and you may develop others.

A doctor has told you to remove gluten. We are telling you the only way to find out if gluten is your problem is to remove all of it. You are the only one with the power to solve this problem.

If you believe your Celiac blood work and endoscopy were not accurate because you were gluten-free or gluten-lite, find a GI that specializes in Celiac Disease and go from there.

[beachbirdie]

Ever since last Christmas when I suddenly developed an acute reaction to breads (severe abdominal pain and then passing out an hour after eating bread), everyone, my doctors, and myself have been wondering why I don't just eliminate breads from my diet and be happy.

You might try something radically different than what you are doing. The carbs in bread do things to your body that are kind of like a "drug high". They make you feel really good for a little while, then they leave you worse than you were before.

In order to break the cycle you are in, you might want to completely give up starch for a while. I don't know what your family's eating habits are, and this could be difficult if you are dependent on your parents to buy foods, but I'd sure fight to try it if I were in your shoes.

Primal eating has helped a LOT of people heal from a lot of diet-related conditions. Start reading at Mark's Daily Apple, he explains SO SIMPLY how to get started!

Basically you just eat good meats, fresh fruits and vegetables, nuts, and some healthy fats. Click here for his "Primal Blueprint 101". It's not too hard to figure out the diet, just need to do a little reading first.

The gluten-free bread substitutes can be really calorie heavy, and still have a bad effect on your insulin levels. Doing without might be helpful.

[SandraLAVixen]

I won't do anything rash right now, but I do need to be 100% certain that gluten is the cause.

My mom feels that this is all psychological, and since last month (August) I've been going to several therapists, so far nothing has helped (other than bringing up a lot of bad childhood memories).

One GI recommended Elavil, it's an old SSRI I think, and makes my stomach feel totally numb between meals (which is good) but does nothing to help when I eat breads/pastas.

Yes actually I am on the "primal" diet right now.

I'm a dancer btw, so we have to stay lean, and I only eat fish/seafoods, birds, and some mammals (steak), the meats do not hurt at all. So I know that is okay. I also eat lots of fruits, dairy, and porridges and that's basically about it.

I used to eat a lot of breads/pastas, but obviously... not now.

LASTLY, what I am scared of is if gluten is NOT the cause but rather something that highlights it. This problem is so strange and my mom and my drs are now thinking I'm making this all up, but I swear it is real and the pain is real but no one will believe me. *frustrated*

[beachbirdie]

I won't do anything rash right now, but I do need to be 100% certain that gluten is the cause.

My mom feels that this is all psychological, and since last month (August) I've been going to several therapists, so far nothing has helped (other than bringing up a lot of bad childhood memories).

One GI recommended Elavil, it's an old SSRI I think, and makes my stomach feel totally numb between meals (which is good) but does nothing to help when I eat breads/pastas.

Yes actually I am on the "primal" diet right now.

I'm a dancer btw, so we have to stay lean, and I only eat fish/seafoods, birds, and some mammals (steak), the meats do not hurt at all. So I know that is okay. I also eat lots of fruits, dairy, and porridges and that's basically about it.

I used to eat a lot of breads/pastas, but obviously... not now.

LASTLY, what I am scared of is if gluten is NOT the cause but rather something that highlights it. This problem is so strange and my mom and my drs are now thinking I'm making this all up, but I swear it is real and the pain is real but no one will believe me. *frustrated*

What are your porridges made of? Are they grains?

Also...a very common ingredient in foods is soy. You could have a soy sensitivity.

I think others have pointed out that the best way to narrow down a dietary problem is to cut out everything and eat only a handful of things that do not hurt. Add things back one by one, waiting several days between each addition.

Really simple here, if breads/pastas hurt, they aren't good for you!

[icm]

I've been ton dozens of doctors all around LA, I've had an endoscopy and a pillcam and I have seen the images myself, there is no damage.

I have tried going gluten free and wheat free for a couple of months earlier this year in the Spring. When I ate a quarter of a doughnut to challenge wheat again I had the exact same pain and passing out.

I'm just feeling so frustrated, I just don't understand what could be causing this and it's frustrating my doctors too because they worked so hard with me and ordered so many tests we've all run out of ideas on what to do.

This is where I would recommend a test from Cyrex Labs and Enterolab.

I believe that the gluten sensitivity should be tested for before it is treated. It is especially difficult to test for gluten intolerance once gluten is no longer present.

Thought I should add:

If you are still eating gluten and feeling unwell (despite negative test results) I believe a trial of the gluten free diet would be a good idea, based on your symptoms.

All the best.

[joolsjewels]

I testing negative for the blood test and the biopsy. However, i did test positive for gluten intolerance on a saliva test ( i know many traditional drs do not accept it). The point is that a soon as i went Gluten-Free in 2009, my stomach problems got under control. Furthermore, there are great Gluten-Free pasta and bread brands out there. I prefer Schar. Toast the bread a little in your own toaster to avoid cross contamintion. The toasting heats the oils in the bread and gives it a little better flavor. I happen to love the multi grain bread as opposed to white bread.i have even shared iit with friends and family and they love it too.

[Pegleg84]

Step 1: eliminate all gluten.
Give it a while. See if you feel better. If you do, then you at least have Gluten Intolerance, though it is still possible that you have Celiac if you weren't eating (enough) gluten at the time of your biopsy. But to be honest, that really doesn't matter in the end.

If you still don't feel any improvement after a few months, try (as suggested here too) eliminating milk and soy. If that still doesn't help, then a serious elimination diet might be needed.

In my opinion, the only way you can truly diagnose celiac/gluten intolerance is by going gluten free.

If your family isn't being supportive, then you have to make it clear that the only way you will get better is by not eating gluten. It's not all in your head. It's all in your stomach, and that stomach needs to heal.

We're rooting for you! It's a hard road, but as I said, it's worth it.

Peg

[SandraLAVixen]

Now, mostly cottage cheese porridge, boiled turkey meat, things like that.

Only porridge that was bad was one made from semolina (that really hurt for obvious reasons).

I need to find out why breads are hurting, not just avoid them, so far I've narrowed things down to what appears to be gluten (with some contradictions).

I don't want this to be something else that is happening and think that I'm okay just avoiding gluten or wheat.

PS: was gluten-free for a couple of months which I had the endoscopy, problem... plus almost all the labwork were done at Quest Diagnostics, I assume they are reputable?

[sa1937]

PS: was gluten-free for a couple of months which I had the endoscopy, problem... plus almost all the labwork were done at Quest Diagnostics, I assume they are reputable?

My celiac panel was sent to Quest Diagnostics...no problem.

[Celiac Mindwarp]

Have you picked up from reading the boards that damage from gluten can be 'silent' which could mean that you MAY be having a reaction to all gluten but not know about it?

And that lots of people here do not have definitive diagnosis but choose gluten free rather than eat things which CLEARLY make them sick?

Sadly, for many people there is no black and white on what makes us sick, and it can take months for a gluten-free diet to help them feel better.

It seems you really dont like what people here are telling you about. No one wants to tell you what to do, only you can decide.

Maybe you need some professional help to understand/accept what you are finding out. It is really hard. Maybe you could take heart from from folks here who have accepted their situation and started to move on and improve their lives.

[SandraLAVixen]

I do listen and I really do think about what everyone says here, I really appreciate everyone taking their time to help me too.

I just want to be absolutely sure I am doing the right thing, because I feel like there really is no professional help on this issue (NCGI).

My mom and my doctors just don't understand, they think I am making this up, and they are just not taking it seriously. They think it's all psychological, because all the tests come back normal and I'm so sad and frustrated.

I also want to make sure there is not something else, not some other test I missed, in case I have something else. I don't even understand how NCGI can damage something and no damage is showing up anywhere.

PS, just so you know, I don't eat really painful breads (like pizza or pasta), I haven't eaten pasta since December 2012. I only try very mildly painful breads just to test and always a new type of bread each time.

[Roda]

Is your porridge oats? Unless they are pure oats(certified gluten free) oats are not considered gluten free. They are cross contaminated. Then there are the 10-15% of celiacs(I'm one of them that reacts just like gluten) that can not tolerate the protein(avenin) in the oats itself. So even gluten free oats and gluten free products that may have cross contamination from them are out.

[Celiac Mindwarp]

It's really tough, isn't it?

My bloods were negative, and I am sure the biopsy I had this week will be the same. I have decided I have to go gluten-free, for life, but it was a tough decision.

I'm sorry you are having a difficult time with family etc. Mine are at least sympathetic, even if they dont really get it.

Hopefully you have at least found a place where people understand what you are going through and dont think you are making it up.

I wish you really really good luck finding a way through.

Mw