SMDBill

Donna, I'm on round 2 of going gluten-free. Round one told me I am gluten sensitive per the diagnosis, but when I went back on gluten (gluten challenge recommended by my GI) it took a long time to see symptoms again. But here I am again with identical symptoms, which for me is confirmation that the diagnosis was right and I'm not as urgently sensitive to it as I had first believed.

 

Anyway, the cough. I have an incessant, clearing-the-throat, cough that I'm confident is caused by post nasal drip from sinus issues caused by gluten. Both times going gluten-free ended the sinus drainage, cough, and subsequent snoring from lack of ability to breathe through my nose. I'm now about a week into being gluten-free again and my sinuses today are now clear. I have  yet to clear my throat today and my breathing is normal and clear. After doing this twice, I'm confident gluten is the cause of my sinus issues, along with many other symptoms.

 

The cough was so bad I would always clear my throat before talking or singing, and often would have to stop while talking or singing just to clear my throat. I sniffed as much as I coughed, and always had people asking if I had a cold. It was embarrassing, especially in a quiet place like a church. I'm happy to be sniff and cough free again and you aren't crazy, nor alone, with the symptom.

That was a great article. Thanks for sharing!

You can definitely get the caffeine through tea and soda, but they'll likely be in smaller amounts than a cup of coffee. I'm a big coffee and tea drinker myself and I can go through an entire day with no effects from missing coffee as long as I have tea or soda. It's probably not the full amount that matters, but just getting some into you that keeps from getting those caffeine withdrawal headaches.

 

I suffer migraines as well and I went tea, soda and coffee free for a time. Basically I only drank water. I felt ok after the first few days but just missed the coffee and tea because I enjoy the flavors. I went back to them and haven't had them trigger migraines, but I'm also medicated for migraines so that's surely playing a big part.

My GI asked me to introduce gluten to be sure of his diagnosis of gluten sensitivity. It took me quite some time to feel symptoms and I failed to grasp as each came on that they were related, just like before my diagnosis. You may feel badly or it may take time, but if you are sensitive to it or celiac, you'll regret introducing it again (unless you're trying to prove it is an issue for you). I don't know your situation, but if you know gluten is an issue in any way, without a doubt, why introduce it back in your life? Surely your absorption won't improve if you do, and you're subjecting your body to lower absorption if you're celiac. I understand the supplementation, but what about improving the diet itself with healthier foods that you'll absorb more readily from anyhow? You'll also improve your body's pH at the same time because many processed foods and drinks are pH low, while fruits and veggies are pH high.

 

There are many reasons not to introduce gluten and the only reason to do it I can think of is because you are unsure if gluten is an issue for your body. If you already know it is, I see no possible good outcome from just tolerating feeling worse. Believe me, I am just 2 days into being gluten-free again because the effects crept back up on me after going back on a regular diet, but now they've gotten back to as bad as when I was diagnosed so I proved the diagnosis at the expense of my health. It just isn't worth it. I'd take the advice posted by others and seek the recommendations of a counselor or your GI or family doctor familiar with your gluten issues.

I am currently going through rough stomach pain that is improving since being back to gluten-free. It was excruciating and would wake me as my intestines cramped. It got so bad at one point I thought I had a bladder infection because it was even sensitive to the touch right where your bladder is, but it was intestinal instead. To me it sounds like you may have another symptom showing signs similar to what gluten did. I am gluten sensitive and lactose intolerant. If I have heavy dairy, I get similar pain, but the added beauty of hemorrhoids and diarrhea. Have you been tested for milk, soy, corn, or other sensitivity or allergy? Have you had a colonoscopy to determine if maybe you have an intestinal blockage or kink in the intestine? Lots of things can cause that pain so it's important to know the cause, or at least eliminate some things as a cause. Your GI may be a good one for these pains unless you are maybe getting glutened without knowing it or if your symptoms are just slower to resolve after being gluten-free.

 

Best of luck to you! Hope it works itself out soon.

After 25 years of marriage, all I can say is that love finds a way. If he truly cares for you, YOUR interests, feelings and health will be top priority. After all, you're only fun and happy when you are safe and healthy. His job is to make sure you are all those things. If he's not living  up to that, I'd have to question the strength of the relationship on his side. That's harsh, but reality is best discovered before a solid commitment. And if he becomes committed, he needs to become committed to you in your entirety, with whatever issues you have and those which may arise in the future. To be a team, it takes two who care more for each other than themselves.

 

I had skeptical family, but they quickly played along when they saw my symptoms improve from being gluten-free. I do not have celiac, but sensitivity to gluten. My oldest son thinks it's in my head and nothing can change his mind. My other son's ex-girlfriend has sensitivity and went gluten free. She's a daughter to a divorced couple and her dad would not put up with her gluten-free needs. He said it was all BS and in her head, so when she spent time at his house, she also spent time in bed and in the bathroom, feeling quite miserable. Those who deny it can have a lot of power over those who do have the issues, and you need  your boyfriend to be your teammate, not your challenger. How it works out is up to you, but maybe buying some books or printing articles with things you highlight for him could change his tune. Otherwise, he's probably not the one you want to suffer the rest of your life with if his goal is to selfishly eat whatever he wants and force you to tag along.

My GI diagnosed gluten sensitivity and actually recommended I go back on gluten to see if it caused harm. It's been 2.5 years, but now I'm having the same symptoms as last time when I finally went gluten-free to rid myself of them. I didn't suffer immediate issues at all, but today I have many that are now clearing up slowly after just a few days so far of being gluten-free again. Sticking to it this time because the last 2.5 years was a test to confirm his diagnosis. I had many symptoms, but I didn't put it all together that they were gluten related. I just thought I was getting older and had joint pain, back pain, skin issues and brain fog.

 

Only one way to know for sure and that's to eat it again and note any changes in your body. If you go gluten-free again later and they clear....there's your answer.

Is it possible when you went gluten free, your salt intake dropped a lot due to the change in diet? If so, you may not be retaining the amount of fluid your body is accustomed to retaining. Just a guess. I supplemented with vitamins and minerals when I went gluten-free and found improvement in the skin on my feet,  hands and elbows. Seems odd you'd be so dehydrated just due to being gluten-free, but there has to be an underlying reason. Vitamin deficiencies can cause skin issues, but not sure about thirst and other signs of dehydration. Keep hydrated because headaches from dehydration are brutal.

I may be one of those people the OP gets frustrated with, but my trip through wondering if I had celiac or a sensitivity to gluten taught me a lot. 3  years ago (I think), I went through some terrible intestinal trouble and a host of other symptoms. I avoided the doctor and tried to figure it out myself. I found out about celiac and gluten sensitivity and decided to try going gluten-free to see if it helped. It actually cured 21 symptoms that I documented for my GI to review when I finally went to get checked. I learned there that going gluten-free screwed up his ability to diagnose correctly, but I had only been gluten-free a few days so he did an endoscopy right away. He found an ulcerative spot in the duodenum, but no other issues. Motrin use was the cause of that due to migraines and daily headaches. He ran a full celiac blood panel, which was too late to be effective or accurate, but he wanted to rule out the possibility. From there he did a colonoscopy, which was clear. His ultimate diagnosis, based on no evidence and only symptoms that had cleared due to being gluten-free, was gluten sensitivity.

 

My GI recommended I go back on gluten and if it caused me issues, remain gluten-free forever. He was confident I didn't have celiac because the damage would have still been evident on the colonoscopy when it was done. So I went back on gluten and felt fine. I didn't feel sick, no pain, so I stuck with eating a normal diet. But over time those symptoms have returned, such as hard bumps in the inside arch of my feet, rashes in the same location, very dry elbows, brain fog, joint pain, intestinal pain that brings me out of a sleep or curls me into a fetal position, frequent restroom usage, frequent diarrhea, constant sinus drainage, frequent clearing of throat due to sinuses, frequent sneezing, snoring loudly, lack of energy, stiffness when going from sitting to standing, and others.

 

2 days ago I went gluten-free again and my bowels no longer hurt constantly, my joints don't hurt when I move, my back pain is nearly gone, my brain fog is probably about half as bad as it was, and my energy level is very high. Only 2 days in, this could be my mind and not actual improvement, but I recall last time it took 3-4 days and I felt like a new person. I didn't go gluten-free just to join a fad, nor to be different or gain attention. It's a difficult way of life to adapt and stick to, and I only stopped at the request of my doctor. I had been true to being gluten-free and never caved to eating food containing gluten. This time, if my symptoms continue to improve, I'll be one of those gluten-free people who can tolerate gluten to some degree, or at least for some short duration of time, but my body is obviously telling me to stop eating it. I don't know if there are others like me, who may not feel symptoms right away but eventually see many, but it's a choice to be gluten-free. The alternative is pain, fatigue, discomfort, bathroom trips, sinus issues and skin issues. If my situation is disruptive in some way to those with celiac, I do wish nobody had to suffer with it, but being gluten-free is now a necessity for me as well. I am also medicated for migraines, but I wonder if being gluten-free for a long period will allow me to stop taking medication for something that could be caused by my body's reaction to gluten. Time will tell.

I think a major part of your problem may be that you've been gluten-free for so long. Damage may not be present, so if you are celiac or just intolerant, neither will show physical evidence. I was gluten-free for only 2 months and I showed no signs of damage so my gastro could not conclude definitively if I'm celiac or NCGI. In the end it really doesn't matter because your solution to the problem is the same for either. I'm in the unknown like you and I just treat it like I have celiac. It's just easier to explain to others and whether it is one or the other is more a matter of semantics for me because I avoid gluten in the same manner and wouldn't change a thing if I knew it was one instead of the other.

You will also not show signs for intolerance to milk. I've been lactose intolerant my entire life and there's no physical evidence to be seen to confirm that via endoscopy. And I think in your case if you avoid gluten and soy and milk, then feel better....then you have an intolerance to all of them. Simple solution is to just continue avoidance and use enzymes to help with the milk issue if they help.

What a wonderful story! It's always great when our little ones get back to their old selves. And you already have your answer for his problem whether or not the doctor agrees What a blessing.

I wonder if you could have an intestinal issue that could be caused by sugar, other grains, or a combination of celiac and something else? However, when you ate foods with gluten and had no reaction, and based on the fact that you were diagnosed based on deficiencies rather than blood or biopsy confirmation, maybe you don't have celiac. That's a pretty good challenge to eat that stuff and the fact that it didn't make you sick-er is really a positive because celiac causes damage. Biggest concern to me would be if you had an internal reaction to gluten but didn't feel it. That would be troubling because you'd never really know when you were glutened.

It's troubling for sure. From the surface of it and with medical tests unable to confirm celiac, it does sound a bit like an allergy to something rather than intolerance or celiac disease. Have you begun to isolate foods and reintroduce them slowly to see what causes a reaction? You'd need a journal to accurately track what you ate and what the ingredients were, but that could possibly give you some insight without further medical bills.

It sure appears possible. My question is whether you have been completely gluten-free or just light? If it's DH it would suggest you haven't been totally gluten-free and you mentioned Thanksgiving and carryout. Were those foods prepared gluten-free as well?

Did your GI mention anything about gastritis or other digestive issues that are also present? I am not a medical professional so this is all guessing, but I'm wondering if an over the counter drug like Prilosec OTC or similar would help ease discomfort when eating? Digestive enzymes as well if you knew which type you needed and in what quantity. For example, I'm lactose intolerant so a couple pieces of hard cheese requires 3 strong lactase enzymes where most people seem to need 1. My first thought was you either have severe food allergies along with celiac or some other condition undiagnosed because the foods you have chosen are safe for celiacs.

Priolosec or similar will cut down on stomac acid production while food is present and there are others that treat symptoms as they happen. Have you experimented with any to see if they help the symptoms after you eat or to prevent them before you eat?

Those probiotics will for a few days make you wonder if they're even worth the money, but a month or two of taking them daily and you will hopefully feel thankful to have made that purchase! Mine have made a huge difference.

Re: low iron/anemia and celiac My daughter was diagnosed with celiac in February 2012 after a biopsy. Much earlier she had been found to have low iron and we corrected that with twice-daily spoonfuls of Palafer, a liquid iron supplment. We didn't figure out she was celiac for a while but her iron levels were okay at the time of diagnosis. Since then I've worked hard to go gluten-free -- the few times we knew she'd had an "oops" moment and ingested something with gluten, she would get a stomach ache about 2 hours afterwards. It was a specific type of pain that came in waves and although pepto-bismol helped with the pain, I knew that damage was occuring. Still, she has had only three of those incidents since February. However for the past couple of months, she has been pale and last week, she was cold to the touch even soon after a hot shower. She's had a blood test getting ready for her check-up but in the meantime, I've put her back on iron supplments and I feel discouraged.

What I don't understand is this: can an otherwise "healthy (i.e.gluten-free) celiac still become anemic or get low iron? Is it just the state of being celiac OR does the low iron suggest that she is somehow still ingesting gluten but not getting the tell-tale stomach pains? I can treat the low iron but I'm really concerned about how to pinpoint how and when she might be getting gluten. Does anyone know if low iron is very common in celiac patients? I've now started her on Iberogast to help improve her digestion overall but I am really worried about how the low iron came about and what I can do to help her. Thanks!

Low iron is very common in celiacs. All my blood work and my biopsies came back negative, but I had been gluten-free and that could be why. So the only indication I had that anything was out of the ordinary, other than visual damage to my stomach (erosive gastritis), was low iron. It's not low enough to require treatment, but it does require daily supplementation. My gastro told me to never stop taking iron, D3 (5,000 IU), calcium, B-complex, multivitamin, magnesium, Omega-3. I'm assuming in some cases additional iron may be needed than a standard RDA amount? I'm not positive so the doc would be best to ask, but if a normal person needs a certain amount it seems likely a celiac could need additional intake. If absorption is an issue then it's likely to be lower than normal.

Foods are the best bet to get iron to absorb, but in the absence of enough quantity I don't see a way around supplementing. Plus, I wouldn't ever stop taking it if anemia is an issue. Just like a multivitamin, it's needed forever unless directed to stop. Lots of vitamins are needed for celiacs and you can't normally over-do it with water soluble vitamins. They just come out in the urine if not used by the body. The fat soluble vitamins must be taken with caution because they are not released easily and can achieve toxic levels if taken in doses too high (Vitamin A, vitamin K are two that come to mind).

I'd talk to the doc and find out how much is too much iron. Taking a safe amount is critical when the blood is low on it, but care has to be taken because iron causes some to have constiptation and other side effects in large doses (some in normal doses as well).

....and wheat just AIN'T natural for our furry friends.....

That is SO true! I had a German Shepherd that would go into horrible, 15 minute or longer seizures at least monthly. The vet didn't believe us about the length and told us that more than about 5 minutes would kill her. We timed them and they were much longer than 5 minutes. Anyway, they were caused by wheat. I researched heavily because the vet just wanted to do what most doctors do and prescribe something. Well, the root cause was never investigated and I found multiple cases of wheat causing seizures in animals. So I switched to non-wheat containing foods and she never had another. I eventually put all 3 dogs on grain free rather than just wheat free.

What's interesting about animals with intolerance for wheat is that it in many ways mimics what we go through. Lethargy, obvious pain, hair falling out in heavy clumps. Once we removed it the dogs' hair (all 3 actually) became shiny and stopped falling out heavily. Even our new German Shepherd (Shelby passed away at 11 years of age) does not shed too badly for that breed since she's on gluten-free food. All our dogs have remained gluten-free and I don't have to worry about them licking me accidentally. It's a great relief for the dogs and it keeps me safe as well.

I don't know how long it will take, but some things that could help recover are very strong (10's of billions of cells) probiotics. Prebiotics help the probiotics act better. Giving the gut some really good bacteria may ease the recovery time and help you feel better sooner. If you look online there are some brands that have up to 75 billion cells for daily use and some that have 200 billion for a week-long regimen to help heal.

I agree with the "malpractice wrong". I wonder if they put any of that advice in writing so you'd have grounds to act on other than he said/she said. That's ridiculous advice for a celiac patient. There are no caveats on when to and when not to eat gluten for celiacs. You can't...period.

I have been gluten-free for around 3 months now and my tests came back negative (biopsies and many different blood tests). However, because of my symptom relief my gastro has asked that I return annually so he can verify my vitamin and other levels are still at appropriate levels. Concerns for celiacs are of course nutrient levels and blood count, but also things like thyroid, proteins and others that can quickly get out of whack with any autoimmune condition. It's important that you have the initial baseline testing so you know where you started, but only the follow-up work can confirm if you are supplementing and eating correctly, if your body is managing itself properly, etc.

Worst I think for anyone with celiac is that even if you don't feel badly due to what you ate, any deficiency you may have (iron, D3, etc.) is just worsened because until the healing happens, the body still will not absorb properly. So then often people seem to go through fatigue again, which makes anything less fun. It just seems like a vicious circle to get into just to have some food that is unhealthy for your body.

I've had those cravings lately as well. Slices of pizza (non gluten-free) just make me want to dive in and enjoy. But the reality is no matter how good they may taste, the repurcussions are just not worth it. I'm not sure how anyone can damage villi on purpose just to eat a food that is literally a poison to your body. There aren't always equivalents to those delicious foods we miss, but I'm thinking hunger is better than sickness every day. Every day that passes makes me feel a little better and to turn back the clock on that recovery is something I can't imagine doing to myself.

Best of luck to you and I hope the results of that eating aren't as bad for you as they are for me when I have been glutened. It's a horrible experience and I think I psych myself out from that kind of eating by imagining the pictures from my endoscopy that showed damage to my stomach and duodenum.

The only difference between knowing the answer and not knowing is knowledge. However, if your body reacts positively without gluten and negatively with it...the decision is simple. Plus, if you do have celiac and don't get definitive proof that you don't, ignoring it and continuing to consume products with gluten can have long term effects you may want to avoid. The decision comes easy when you learn your body can be permanently and irreversibly harmed by continuing down the same path, but if you don't have it and gluten-free does not help, then you're right...why restrict yourself at all. Eat what you want and have your GP focus in on what could really be the problem.

Lisa,

I had been gluten-free for 8-10 weeks before the blood work and endo. What he saw during the scope was duodenitis and erosive gastritis. The biopsies came back negative for H pylori infection and negative for celiac. I do not have the results and I only got that info from the biopsies from his nurse. He was supposed to call me back yesterday to discuss the results but he never called. I'll try again today.

My dietary response was quite remarkable to being gluten-free. No more oily stools, loose bowels, clear skin, no headaches (except from the Prilosec OTC he had me take for 2 weeks to help the erosive gastritis!), more energy, regular bowel movements (not 5-8 per day like before), better muscle feeling, less gas and bloating, and a few other positive improvements. Whether celiac or intolerance, my body improved enough to let me know something was deeply wrong and removing gluten fixed it.

I just had an endoscopy 2 weeks ago. My prep was fasting from midnight the night before until my procedure. I arrived there, they took blood and started an IV, then came to get me about 10 minutes later, wheeled my bed to the procedure room, told me what would be going on, then started the meds to put me under. I woke up later in recovery and that was it. No prep, no pain, nothing. Simple and in and out.

I'd definitely question a laxative and whether you're going through both procedures at the same time or not. And I'd also follow up to make sure your insurance isn't billed for an extra procedure if they don't perform it. If it got to the pharmacy, it probably also got to the insurance company.

Thank you all. Several things are troubling after getting such "normal" results. Gluten free cleared 21 symptoms that I was able to document. When I say I had DH, that's an assumption based on what my skin in the arches of my feet looked like pre-gluten-free. They appeared as dard red/brown blisters very deep in the skin. They itched badly, mostly when I removed my shoes or bathed. They were identical on both feet and within 4 days completely disappeared after being gluten-free. I also had very rough elbows and a bit of psoriasis on my scalp. Those cleared at the same time.

I haven't found documentation where sensitivity/intolerance leads to those kinds of conditions and correction after gluten-free. I don't doubt it exists and I'll keep looking, but what I'm actually thankful for is healthy villi and no headaches.

Here's a situation and question: When I was not yet gluten-free and my pains were at their worst, my stools were very lightly colored and very loose all the time. When I went gluten-free I immediately also started to supplement. I noticed within a few days that my stools turned a greenish color, which is normal for iron to do. When I was glutened that coloring changed again back to a much lighter color and my urine was also not the bright yellow it normally turns from the strong B-complex I take. When the pain subsided, the coloring to my urine and stool returned. I never stopped supplementing along the way. So my question is, if it's not celiac, why would I not have been absorbing those nutrients properly during that time period? I've now been free of gluten since that one time several weeks ago (4-5 I think) and my stool and urine coloring is back to green/bright yellow. Does that provide a true indication of absorption? It seems to me as though it points right to a lack of absorption but I guess the only way to know is to wait until I am glutened again and watch for it.

I don't care which I have in the end, but it would be nice to know what to call it. My doc did not call back yesterday so for now I'm still in the dark. The nurse said all my tests are clear and perfect, and there were many, so I'm extremely thankful that I just have to manage this. I have called it celiac due to symptoms and indications when glutened plus my recovery and changes to my body. I may be wrong so it would help if I knew for sure. Either way the fix is the same so it's almost semantics at this point, but if it is celiac I have a lot more concern about monitoring with my physician than if it's a sensitivity since celiac causes damage and can have far worse long term effects.

Thanks for all the inputs! I really appreciate the concern and insight. When I had self diagnosed it was easy because gluten-free gave me my answer, but after all this testing it makes me feel as though maybe I was wrong. I'll ask the doctor what his diagnosis is but if he bases it on testing it'll likely be sensitivity. Maybe that's all it is and I'm not as bad off as I thought. But I sure would love a regular piece of pizza and some homemade rolls!!!!! haha (No, I wouldn't do that to myself!)

Well, today I called the Dr. and got to speak with his nurse. I was concerned about H pylori he thought he found in my stomach. The biopsies all came back negative for the infection, negative for celiac. He took many biopsies in my intestine and quite a few in my stomach as well. Nothing was positive so I ended up with a diagnosis of duodenitis and erosive gastritis, but no medical proof of celiac. All blood work and bone density came back normal. Even my cholesterol has dropped. So I'm not missing any vitamins/minerals, bones are fine, no celiac found through 6 biopsies. Nothing other than my symptom improvement since going gluten-free has pointed to celiac.

My wife asked, "So do you not have celiac?" I can't help but believe I still do because I had DH bumps on both feet that disappeared after gluten-free, my skin issues cleared, my headaches are gone, my energy is back, my sinuses no longer run, my stools are darker again. From what I've read intolerance doesn't lead to all the same symptoms as celiac, though they do mirror in many of them. I hope someone here with intolerance can shed some light on it or maybe confirm the changes I've gone through could or could not be intolerance rather than celiac.

Confused