
SMDBill
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My only issue would be the gluten challenge. After 5 weeks gluten-free I got glutened and it was excruciating. I am not sure I could do it again, especially day after day. The one time on accident with a tiny amount (crumb or two) was horrible so going back to gluten is not something I'd be very open to. I also think I had DH on my feet. I had deep, firm blisters, about 15-20 on each foot (in the arch of my foot). They itched like mad and never went away until about 4 days being gluten-free. All of a sudden all my skin issues disappeared, but those bumps were probably DH and obvious signs that I have celiac. I didn't know that at the time or I'd have never stopped eating products with gluten until my examination. I was naive and went gluten-free prematurely, but going back to gluten is not really an option since it makes me so sick and for so long (4 days to feel more normal and another 3 to not feel sore at all). Not sure what to do at this point, but will discuss with the doc on Monday to find out my options and see what he thinks. He's a clinical professor of gastroenterology at Georgetown Hospital and an original member of the medical group he formed near my home. Many years of experience, teaching and in practice, so I'm hoping he knows a lot about celiac. We'll see soon!
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So I'm 7 weeks in to being gluten-free and decided I need to get diagnosed officially. My goal is to find out what vitamins or minerals I am deficient in and what strategies the gastro recommends when I get glutened. I read several places that the antibodies tested for will be present up to 6-12 months after being gluten-free. Since I'm in my second month I hope to have sufficient counts, especially since I was glutened a week ago, to show up on the blood tests.
What tests should I make sure I discuss with the gastro? I have a 6 page log of my symptoms before and my condition after being gluten-free. I listed all supplements down to each element and its mg/mcg count that I am taking. I've tried to describe all I was feeling and how things have improved. What else could be important to note or ask? I would appreciate the advice of those who have already walked this path to know what to ask, discuss, etc. that I may not remember or know on my own. My appt is Monday.
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That's a pretty easy question to answer!!! LOL. Interestingly, the article mentions that there are people who know they have an issue with food, for us it's gluten, and yet they will eat the food with a comment similar to, "I'm going to pay for eating this." That's just a situation I cannot imagine putting myself into. I crave so many wonderful foods and have now been gluten-free only 7 weeks. I got glutened and know full well how painful and uncomfortable it can be. There's not a food on the planet worth feeling like that for. I feel for those who give in to that urge instead of remembering just how bad that payback is going to be. Even for people who feel no symptoms but are celiac, the damage still gets done.
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I'm not sure re-introducing gluten would remove fatigue even in a person with no issues with gluten. Removing gluten does not cause fatigue and proper supplementation should alleviate any issues, along with a proper diet and care to keep gluten out. What I wonder more, as mentioned already, is if you could also be lactose intolerant or have severe reactions to another food, product or something in the environment? Your physician can certainly help narrow down the possibilities, but reintroducing gluten to an intolerant person seems like a poor plan B. I'm not in any way trying to sound mean, but your body wants nothing more than to heal and it's telling you something is still harming it. Adding gluten won't remove that something and will only introduce another harmful thing to deal with, compounding an already bad problem.
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Wow KMMO320, that's some rough punishment you've endured lately. I will give the some ibuprofen or something a shot, but my pain lasted 3-4 days so I kinda fear doing it to myself. That cake incident had to be pretty scary when you caught yourself.
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I'm not sure about the pain part, but the green poo is perfectly normal. I began taking iron when I went gluten-free and that's exactly what happened. I read that iron can also contribute to C. Anyway, when I got glutened the green also went away, which showed I was not absorbing properly.
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Thanks everyone! Your ideas will come in handy for next time.
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As mentioned in a few of my posts, I self diagnosed. My symptoms all pointed to it, I went gluten-free and they all (plus some I didn't know were symptoms) disappeared. I got glutened and they all returned. I can tell I'm not absorbing again from the glutening so my iron and other levels are out of whack.
Anyway, appointment made for 5 November with the gastro. I listed 6 pages of info and symptoms to take with me, along with results from going gluten-free and every ingredient of every supplement I take. Praying to get medical diagnosis to have in my record so I can get a full battery of tests for vitamin and nutrient levels. And then I can get official support to have the kids tested.
Fingers crossed! I just got glutened a little over a week ago so my antibodies should be in full swing.
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I was told the fryer for fries is in front of the fryer for everything else. THey never mentioned how they cook the sweet potato fries, but my concern is if those items in the rear fryer are lifted across the fryer for fries, which is dedicated to just fries, what happens if some of that grease or some of the breading drops in the fryer for fries? I'm sure we all know the answer, but how bad does a CC drop of grease effect an entire fryer of oil? Wish I knew, but scary to think they're nearby each other as they described.
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I had the rough skin and now I believe I had DH showing signs on my feet. I had these light brown "blisters" that I called them, but they were deep in the skin rather than surface blisters. They itched and were red around them. I also had daily headaches and occasional (monthly) migraines. Fatigue, drainage, muscle weakness/soreness. gluten-free solved each and every symptom I had in relatively short time....2 days when I felt like a new person and the skin and muscle issues stopped just a few days later. It was like a miracle for me to find out.
If your doc thinks you are crazy, find another. Elimination of gluten is confirmation of the problem if the symptoms resolve. If he/she does not accept that as proof even after negative test results, get another opinion. Find a specialist and make sure they agree with the testing you believe should be done. THeir gut doesn't hurt with gluten....yours does! You have a right to a proper diagnosis, even if it is a lot of work for them.
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I do not have chronic sinusitis, although I have had a few bouts in the last few years. However, I had constant drainage that made me clear my throat constantly. I developed a few throat and sinus infections that were only killed by strong antibiotics. All my life I've been susceptible to strep throat, but not sure if that mattered back then that I now have celiac.
After about 4 days being gluten free I noticed I hardly had to clear my throat at all and the morning sinus drainage/blockage has minimized. When I got glutened a week ago my sinuses started to act up again and I was clearning my throat a lot. Those symptoms have since settled back down and the drainage is minimal. I'm guessing if you are gluten intolerant or have celiac, the sinus issue will change or disappear once you know and go gluten-free.
Are you gluten-free right now? If not it may be a good idea to see your gastro and get tested for celiac before going gluten-free. Going gluten-free will give you answers but it'd be best to find those answers after knowing the root cause.
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One thing about that litter that may be interesting is something I saw on that show where the guy goes to different families to help with cat issues. One family in particular had a cat that was declawed and then started spraying. Their logic was that he was angry and was acting out. The guy found that not to be the case at all. They had changed his litter and after declawing he had all his weight bearing down on sensitive paws with no claws to help. The litter was made of larger granules of litter and it literally hurt his paws so he found other places to use the bathroom just to avoid the pain. He had them switch to a finer granule litter and the cat was loving it. The spraying stopped and he didn't mind using his box at all.
I know that's a bit of a tangent, but the kitty is going through something that may be an easy fix if it's related to the new litter size/texture. I had a German Shepherd who had terrible seizures that lasted up to 15 minutes quite frequently (monthly). We finally figured out SHE was allergic to wheat and the seizures stopped on wheat-free food, but I never correlated the wheat issue to myself until I was prompted to research it by my sister.
Good luck with work and your safety while in that environment. I'm sometimes scared to even walk in some places, especially pizza places where they throw crusts around and I can see wheat fluffing up in the air. I avoid them now because of the fear of ingesting airborne flour, but it's both embarrassing and a pain for others who love their food. Working in that kind of environment is something you will figure out how to adjust to and I hope you can make it safe without worry.
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Thanks for the advice everyone! I plan to make an appointment for myself as soon as possible. I did some research and found that in the first few months there may be some success finding the antibodies since they keep being produced even after going gluten-free for up to 12 months. I'm only 6-7 weeks gluten-free and got glutened last week so I may have some luck. Either way, the GI and I will have a conversation and they can determine whichever tests they would like to do. I just refuse to eat gluten again so that's my only roadblock. I know how that feels now and I refuse to suffer through that again, especially for a month or more.
I'll post the details of the official tests and the doctor and I will discuss having my children tested. I have 4 kids so that should just be a grand time if they want to test them all
But, better safe than ill later like I was/am.
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I was glutened a week ago today. I feel so much better now, but it has been a difficult week with pain, D, C, D again, muscle weakness and pain, headache (haven't had one since gluten-free). What is your secret to healing as quickly as possible? Probiotics? Other supplements? Foods?
I started taking VitaCost 20Bil probiotics and I noticed some faster healing, but that could be coincidental with the timing of natural healing...just not sure at this point. I take double the dose right now and will cut to normal dose on Tuesday. That'll be one week of double dosing to help heal the damage this past week caused. SHould I be taking other steps?
Looking for your best secrets to managing times when getting glutened to make future events hopefully less painful. Thanks everyone!
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tictax707, I feel for you. It's so frustrating! I'm still new to all this so I'm still in the initial paranoia. You sound like you've been vigilant and just had a slip of the mind that had bad results. I am sure it happens to many people, but that in no way makes anything better for you. I've only gotten gluten once and I am only now starting to absorb nutrients again so I can feel your pain!! It sucks that foods aren't just labelled as gluten free or NOT gluten free, but then they'd have to do that for every possible type of food allergy as well.
Good luck and speedy healing!
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I have not yet heard anyone say whether they have tried, but I have seen Probiotic products that are 7-day regimens for times when the gut gets into bad shape for more reasons than just gluten. I wonder if it would be worth a shot? Today's probiotics contain millions up to 35-70 billion bacteria cells to help get the gut the type and variety of bacteria it needs. Diarrhea and other things flush the good and bad bacteria, so replacement is sometimes necessary for celiacs. Personally, I take VitaCost 10/20 probiotic and I'm doubling up right now each day because I got glutened less than a week ago. The healing was slow without the probiotic, but the symptoms of glutening went away faster after I started the probiotics. Could be coincidental healing, but worth the shot since they're not harmful at all.
I am just throwing it out there in case you get frustrated and look for more immediate help. My 20 billion cells is minimal compared to that 7 day regimen that is something upward of 200billion per day. I think that's why the time period is so short. I read how many trillion bacteria cells are in our gut, but I cannot recall. Hitting it with heavy probiotics is possibly something to help more quickly get the gut in order.
If you are interested in probiotics, without knowing if you take them already, there is a lot of info online. I found that 1) you need more than one probiotic in order to heal the whole gut so look for those that contain multiples. THe one I chose has 10, but there are many types...2) the ones you find in a store seem to be of lower cell count than those at GNC or vitaminshoppe. Amazon also has a lot...3) They are not terribly expensive and you can get a discount for buying multiple bottles at vitamin shoppe, not sure about GNC or others...4) There are some accounts by specialists detailing why they prescribe them for patients with Celiac while others seem to ignore the possibility they can help. Mostly it seems as though those who do not prescribe them are less knowledgeable about what they can do rather than having evidence that they do not work.
Good luck with whatever you find that works. There is also information online from several specialists encouraging people to take a dietary enzyme with every meal in order to aid digestion. It may not be gluten that is now bothering you, but something that just irritates an already tender gut. I don't take an enzyme, and probably should, but perhaps that's another possible avenue to research and decide if it's right for you. Hope you find the answer soon and can really get healing.
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I'm in southern Maryland and we got hit with Irene last year. The trajectory of this one looks to be going north of us, but not far enough to keep us out of it. We'll be experiencing hurricane force winds once again. We're about a mile from the Potomac River, which leads right into the Chesapeake Bay. Spent the day replacing the chainsaw blade, testing the generator, rebuilding a generator cord, getting lawn stuff put away and just verifying all our supplies are ready. My wife went shopping yesterday and we have 4 cases of water (in case we're out of power for a week or so), food, batteries for flashlights and other necessities. We take the dogs out to use the bathroom even in 100mph winds because they have to go a few times a day. That's the worst. In the dark is even less fun, but a flashlight, fresh change of clothes and a lot of insistence that they hurry is all we can do.
Best of luck to anyone in its path...stay safe! Get your supplies in advance and watch out for your neighbors as well.
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It definitely could still be celiac. I'd ask for testing (biopsies) or find another opinion. He sounds reluctant to get to the root cause.
It's gross, but it's important so I'll throw it out there. Since at least 2006 I have had occasional oily stools. I didn't understand why but I just attributed it to my lactose intolerance (since birth) and figured that it interacted with fat absorption. It was not frequent enough to concern me and there was no blood or other issues at the time. But, fast forward to the last year and nearly every fatty meal (steakhouse, fast food) left me with the same problem, usually also with D. It got heavier and as it got worse, so too did my other symptoms that I never thought were related.
Once I went gluten-free 6 weeks ago I never had another issue with it until I got glutened, and that was one of the first signs I noticed along with the D.
Oily/fatty stool, if like me, is just one symptom of a bigger problem. You may not have celiac, but it's a sign of something causing incorrect digestion and lack of absorption. There are conditions, such as gallstones, that could also cause the fatty stool, but if they've ruled those others out as possibilities I'd look to trying gluten-free. If it stops while gluten-free, there's your answer.
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I'm so glad I'm not alone on this one! Well, that sounded bad because I wish it weren't the case for you, but knowing I'm not the only one dealing with those conditions at least makes me have a better sense of how big the problem is.
Yesterday I got home from work and had forgotten to take my vitamins that morning. I took my keys, wallet and other things out of my pockets and put them in my kitchen drawer where those things are always kept. I then got my daily vitamin container (day of the week) and emptied the contents for yesterday onto what I thought was a clean counter. Huge mistake. I picked up the first one, a gel omega-3/6/9 pill, and right on it was a crumb of something. I am so fortunate I saw it on the first pill and not the last. I looked closer and the pattern of the Corian countertop was hiding the crumbs so they blended in. I scooped up all the vitamins and immediatly threw them away. Better to lose 1 day's serving of vitamins than suffer a glutening (again).
I clean the kitchen often. My wife is very busy and I help wherever I can with cleaning, laundry, etc. I seem to constantly be wiping crumbs from the counter, which are never mine, just to have it sterile. I clean it off, then clean it with a disinfectant wipe or household cleaner. Then I wash my hands thoroughly. It's painstaking to do it all the time and nobody realizes how easy it would be to touch those crumbs, then forget and touch my mouth without thinking. I try to be vigilant, but we all get distracted and it could be at the wrong time.
I hope your family can come around and realize just how dangerous those crumbs are for you. I have the same battle to fight at home and I have 4 kids who, like most kids, just don't clean after themselves well. Plus dinner preparations don't always include all gluten-free ingredients, but my wife is great about helping keep me safe as well. Best of luck and please let us know if you find a way to sway them that makes a positive change.
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I started losing weight quickly, but I need to shed weight. I didn't want it to go too fast or the turnaround once I start introducing more food would be to quickly pack it back on so I wanted a slower approach that would gradually get it off. I eat mostly fruit, nuts and candy as a treat during the day, followed by a full dinner at night. I used to always eat one dessert in a day and snuck in snacks here and there, along with sweet tea and coffee filled with sugar. When I switched my whole routine I noticed the weight dropping fast. My answer was to reintroduce milk. I'm lactose intolerant so I went with Lactaid. To me it tastes like milk, but that's because it's been years since my last glass of white milk. I just treat myself to a big glass of chocolate milk every evening as my dessert. I may still have a gluten-free brownie occasionally, but I know the milk is fatty and will add needed calories and other nutrients.
It's nice to be on the side of making sure I eat enough. I've always had to watch what I eat and I still lost the battle. Now I make sure I take in enough good stuff and I treat myself to get the rest.
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Lactaid does not taste similar at all >_< Waaaaay too sweet and watery and tastes off.
I must be a lucky one because I'm guessing my lactose intolerance kept me away from milk long enough to not remember exactly how pure white milk should taste. I gulped some Lactaid down last night and it met my memory of how milk used to be, but that memory is probably skewed from reality from the years of passing up milk. I drank the 2% variety and I'm not sure I could handle the taste of whole or skim.
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Have you tried a stool softener? It may just take loosening things up in order for the gas inside the instestines to find a way out. It's not an immediate answer because they take time to work, but a suggestion nonetheless. Hope you pain subsides soon!
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Blood tests are known to be sometimes inconclusive or incorrect. Biopsies will support the case. The true test would be how he feels if he is gluten-free. Going gluten-free after a negative diagnosis sure can't hurt, especially if you only try it for a short time (weeks/months). I felt changes after only 2 days and my life was changed. You may get different results, but if the doc doesn't do more testing I'd suggest finding a second opinion. From what I've learned I don't think anyone can rule out celiac without biopsies in addition to the blood tests. If you still don't get the answers and suspect celiac, try gluten-free and if he improves, there's your answer.
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I've been lactose intolerant since birth. If lactose is the problem, have you tried switching him to Lactaid? I'm not a fan of white milk but to me, Lactaid tastes nearly identical. I use it daily now that I have celiac in order to start the healing. Is he lactose intolerant or can he process smaller amounts of lactose? It really depends on the condition. Milk causes severe D in me so I know when I have it that I'll pay the price. Lactaid has nearly solved that and I have not yet cut out milk in products, such as candy or baked goods. I use lactaid in mashed potatoes and other baked things that I make myself, but I still ingest if something has milk within it. The small amounts seem to not create an issue, but a glass of milk causes major problems.
Can you try cutting him down and substituting where possible? Have him try Lactaid? I drink a glass of milk every day and Lactaid was the answer. Soy was nasty to me and I couldn't adjust. Almond milk was ok. Lactaid was my answer, but others prefer the other varieties so you could experiment until you find his preference.
Negative Tests.. But All The Symptoms?
in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Posted
I self diagnosed as celiac and not intolerant because my issues are muscular, I had mild DH on my feet, my heart racing stopped and my migraines and headaches disappeared, along with healed skin and other seemingly odd symptoms. I don't believe intolerance would lead to the severity of symptoms I was suffering. But, I'm in the same boat you are. I'm getting tested officially Monday, but I'm already gluten free so I suspect the tests will be negative. I don't mind, mainly because gluten-free was the answer and when I got glutened I suffered badly. My main goal is to find out what I am deficient in and work toward getting all my levels where they should be and I'll be gluten-free forever.