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TTNOGluten

Help,,,, About Being Glutened?

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I have learned alot from all the great advice on this forum, one thing that continues to confuse me is how if I know have been glutened when I have yet to feel worth a damn. In a nutshell, since my diagnosis 2 1/2months ago, I have had an improvement in bloating, burning and a god-aweful lump in m throat sensation, but have traded those symptoms for continous relentless abdominal pain in the upper belly with disabling cramps and spasms in my mid back??? I am now to the point where despite being gluten free I am requiring some narcotic pain relievers to make it through the day. I hate this!!! I have never taken a med my whole life, and now at 41 y/o I feel like an idiot. I have to work, I have to be able to function, and to get through a day and I have to have some pain control, it is aweful, like someone tearing my upper belly with a pair of pliers. What I just don't understand is being glutened, I suppose because I have never ever felt well enough to know if was glutened or not. do you eventually if ever start feeling better?? do you hit a baseline when you feel well enough to know if then you got into some gluten, if so I guess I am far from being there. My Gastro cannot understand the severity of my constant pain, and why I am not improving and starting to feel better

anyone got any other ideas for this pain??? found out I do react to milk protein/casein as well after recent allergy testing.

My wife's comment is oh my god, what are you going to eat?

dirt/ water and shoe leather I am guessing.

any thoughts???? would love to hear everyone's time to improvement as I am getting more convinced that there is just something else that has to be causing this degree of pain, even though the GI docs say everything else looks good.. already taking Nexium as well

thanks as always

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I'll take a stab...Have you eliminated dairy from your diet. Dairy can mimic symptoms of a glutening. After some healing takes place, dairy can be reintroduced successfully.

Are you dehydrated? Drink plenty of water to keep things moving along. Before going gluten free I had terrible lower/mid back issues with debilitating pain. Currently, when a bit constipated, I get that same old back issues, although not near as severe.

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Yes, the casein could well have been causing your continuing symptoms. Many gluten intolerants have problems with additional foods, dairy being one of the most common. If you continue to have problems keep a food and symptom diary and see if you can detect any patterns from what you have been eating. If not, you may have to do an elimination diet and start with a very plain, simple, whole foods diet that you are stable on, and then add in a new food each week and see how you react.

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I did go lactose free, and only until recently did I realize that it is actually casien that is the problem according to the allergist, not just the lactose issue. Maybe what I am feeling is normal response, I guess I kind of figured that I would feel well after awhile and would only develop symptoms if I was exposed to gluten, I guess my thought process is a bit skewed, as the symptoms are still constant 24/7 with the pain.

Still a bit amazed that with all the advances in modern technology that we can put a man on the moon, but can't alleviate abdominal pain and cramping from this darn disease. Sure is frustrating dealing wih chronic pain, but I am sure it is the same for most folks on this forum.

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Two and a half months is a relatively short time in gluten free terms. You have to realize that you have a lot of healing to do before your digestive system is going to start functioning as it should. To help it along, you can try taking digestive enzymes with meals because the pancreas is often negatively affected by gluten. Also a good probiotic to promote healthy flora in the gut. I personally found these two things to be most helpful. Some people swear by L-glutamine for healing the gut - it could be something to try.

As for putting a man on the moon - there were a huge number of people working on that; the number of people working on celiac disease is miniscule :rolleyes: -- there's just no money in it.

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thanks for the advice mushroom, I have ordered some probiotics and digestive enzymes as well, was even considering peppermint oil capsules, as I have heard they can be beneficial, heck I'll try anything at this point in time. I sure admire many of the other folks patience with this forum, which is a not one of my strong suits

thanks again as always, I am always looking to hear any sort of advice that may help

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What new foods have you started eating? If you're eating gluten-free breads, they can have xanthan gum that some people don't tolerate. They also have a bunch of grains and starches you might have never eaten before.

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Other things that get me are high fructose, xanthun gum, guar gum. Is your kitchen REALLY clean? Did you throw out the toaster, not using the pasta strainer, etc. I did a thorough clean up of my kitchen when I found I wasn't getting better.

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Hi there. I would definitely take the advise of the other posters about kicking all processed foods, kicking dairy too and as Mushroom suggested taking some L-Glutamine. I really notice the difference when I don't take it!

Also look at decongesting your liver - the lump in the throat is a dead-ringer for liver congestion. Talk to your doctor about what might help. Peppermint/Milk thistle and dandelion right now are my best ones. Make sure that you rest during the day too if you can with your feet up... that will help things along. Mid back pain could be adrenals, spleen, gallbladder or pancreas. All of these organs suffer with the overload of toxins the body has to get rid of. L-glutamine will help form extra cells quicker in your gut lining to help block the food proteins and other things that are leaking from your damaged gut in to your blood (these all end up in the liver, which is desperately trying to detox things, but is probably very overtaxed).

Let us know how you get on. :)

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I did get a new toaster, and am fairly meticulous about cleaning everything and rinsing, have not replaced the strainer, but we really only eat rice noodles through it, and it is washed in the dishwasher prior to every use, also have new knives, cutting boards etc.. My wife is certainly on board with trying to be as proactive as possible, thank god!

I have tried to increase my hydration with these flank and back cramps. Seems like such an odd symptom for celiac disease, even my GI guy looked at me like I was nutso when I told him this, weird part is that it seems to be mostly upper abdominal pain that I have radiating into my my back and flanks, I even went so far as to have an MRI of my mid back to assure that it wasn't my back causing the issue. Cat scans have been normal of abdomen, only thing is some small gallbladder polyps which they say shouldn't cause any symptoms?? may just have it taken out to see if it improves things??

I guess I still struggle with accepting the fact that the celiac is causing all of this, along with this overwhelming fatigue and malaise, especially as up until 3 months ago I felt great without any real belly problems at all, and it seemed to all start after I was hospitalized for a leg infection following a stupid injury to my knee. Who know's, just ramblimg again, desperation does that to me!!!

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