Anyone Else With...

[SLB5757]

I guess this would be one of my main symptoms after I eat wheat. Its almost as if my bowels completely shut down for four days (sometimes three), followed by a day or two of going to the bathroom three times or more, and then it returns to normal again. It is a very noticeable pattern. Of course I get very anxious, extremely tired, almost feel like I have a "mask" over my eyes, and get severe stomach pains as well following any accidental consumption. Just wondered if others are completely constipation predominant. I really feel like my system goes into 'shut down' mode rather than "get it out" mode as most celiacs suffer from.

[i-geek]

I guess this would be one of my main symptoms after I eat wheat. Its almost as if my bowels completely shut down for four days (sometimes three), followed by a day or two of going to the bathroom three times or more, and then it returns to normal again. It is a very noticeable pattern. Of course I get very anxious, extremely tired, almost feel like I have a "mask" over my eyes, and get severe stomach pains as well following any accidental consumption. Just wondered if others are completely constipation predominant. I really feel like my system goes into 'shut down' mode rather than "get it out" mode as most celiacs suffer from.

Here! *raises hand* In fact, today is the "flush it out day" from being glutened accidentally on Tuesday. Four times between 7 AM and 4 PM and the day's not over yet, so probably at least once more (TMI, I know. Sorry). Yesterday was quite painful. Nothing was moving in my GI so I felt really awful (dinner was rice cakes with peanut butter and a handful of corn chips because that was all I could stomach), plus I'd just finished with the 36-hour migraine so I was exhausted and brain-foggy on top of that.

Happily, the constipation stretches seem to be a lot shorter from accidental small amounts of gluten than from frequent deliberate intake. I used to be blocked up for 3-4 days at a go, and then diarrhea for a couple of days after that. This time it was only 2 days and no diarrhea.

[burdee]

I guess this would be one of my main symptoms after I eat wheat. Its almost as if my bowels completely shut down for four days (sometimes three), followed by a day or two of going to the bathroom three times or more, and then it returns to normal again. It is a very noticeable pattern. Of course I get very anxious, extremely tired, almost feel like I have a "mask" over my eyes, and get severe stomach pains as well following any accidental consumption. Just wondered if others are completely constipation predominant. I really feel like my system goes into 'shut down' mode rather than "get it out" mode as most celiacs suffer from.

I also struggled with constipation for years before I was diagnosed with gluten intolerance (actually Celiac Disease). My constipation was so chronic and severe that I eventually had to endure hemorrhoid surgery 11 years ago. During my 20s I took laxatives nightly just to have my hard, floating stools. Later I learned about magnesium and vitamin C, which also helped me have regular, although hard non floating stools. Eventually I was diagnosed with celiac disease and dairy allergy. Eliminating those foods helped somewhat. However I soon learned I was also allergic to soy. Removing soy also helped somewhat. Eventually I saw a naturopath who tested me for many different foods (via ELISA blood test) and intestinal infections (via DNA Microbial stool tests). Over the past 4 years I've eliminated all of my 7 diagnosed food allergens, which also improved my regularity a little more. However identifying and treating 4 different pathogenic bacteria, one parasite and candida finally changed my constipation to normal (soft) stools. Above all I took massive doses of probiotics during after after each treatment with antibacterial, antiparasitic and antifungal drugs which addressed each of my 6 different infections during the past 4 years.

So now I finally have absolutely normal stools every day. I still take some magnesium and vitamin C, but not massive doses. Mostly I just keep taking daily probiotics, which helped me as much as eliminating all the bad bugs in my gut and abstaining from my food allergens which made my gut cramp. It's been a long 6 year journey, but I finally feel well.

SUE

[bridgetm]

I'm new to this and have been having the same problem. For months before I thought of the possibility of a wheat or gluten allergy/intolerance, I would be very bloated, cramped and constipated for a few days followed by a day or two of diarrhea and then finally a normal day or two before the cycle started all over again. Once I tried cutting out wheat, this cycle was a little shorter with a day or two more of normalcy. Then I tried cutting gluten for a few days and felt better, but I inevitably consumed wheat or gluten again and was out of whack all over again. The same thing if I eat medium-large meals. Coffee or highly caffeinated tea also make a difference.

It's only been in the last few days that I've really made the connection between my diet and how I feel. I've decided to pay closer attention to food labels (for a while I thought it had more to do with the amount or was just sensitivity, but now I wonder if it's flat-out intolerance) and keep track of everything.

[sandsurfgirl]

Yep I've had that too. I've had undiagnosed celiac for my whole life and got diagnosed recently at age 40. I've had all sorts of different phases with it over my lifetime, but the C has been predominant in much of my life.

I saw in your siggy that you came up positive for RAST test allergy to wheat, barley and rye, so does that mean that you have to worry about anaphylaxis? Do you have to carry an epipen? Do you have the celiac autoimmune disease in addition to the allergy or is it all allergy? Sorry just being curious.

[runningcrazy]

Constipation was my main symptom. My doctor who refused to believe it could be celiac eventually had me taking 6 different laxatives a day. She had taken xrays of my abdomen and she said she'd never seen it so bad.

Headaches and constipation along with a stomach ache is my usual issue. I havent been glutened badly yet(thankfully) since I went gluten free in August, but I know that its what happens to me. Im all messed up actually.

[sandsurfgirl]

Constipation was my main symptom. My doctor who refused to believe it could be celiac eventually had me taking 6 different laxatives a day. She had taken xrays of my abdomen and she said she'd never seen it so bad.

Headaches and constipation along with a stomach ache is my usual issue. I havent been glutened badly yet(thankfully) since I went gluten free in August, but I know that its what happens to me. Im all messed up actually.

I went to the ER once doubled over in severe pain. The curtain on my bed was open a bit and I could see the doctor across the way looking at my xrays. It was quiet in there so I knew they were mine. He said "Oh my God!!" and called the nurses over. They were all pointing at my x ray and one nurse said "Whoa!" I was freaking out thinking I had cancer or something deadly.

Then the doc comes over and says "Have you been eating a lot of Barbecue?" I was like "Umm huh?" Then he says "Well it's summer. Have you been eating a lot of beef from the grill?"

Again I was puzzled and the he told me I had the worst case of constipation he had ever seen. He said "Well, ummm you have a lot of stool." I was mortified and so upset that I spent 3 hours in the ER and was in so much pain from a simple case of constipation.

I had no idea back then in my early 20's that it was celiac and that I was in for many more years of that nonsense before I would find out why I had the "worst case of constipation" the doc had ever seen. If only he had a clue back then to think that it was abnormal for an otherwise healthy young woman to come in with that and checked me for celiac.

[Roda]

Chalk me up as one as having constipation. If I accidently get glutened my abdomen will blow up with gas. It is quite uncomfortable. Then I am unable to move my bowels for 4-5 days. Little did I know that constipation was a symptom. My mom said she had trouble with me from the day I was born. I had two fecal impactions (that I know of) before age 5. Always had to "watch" how much dairy I was consuming growing up because it would make it worse. In my 20's I would get bloated and distended, but couldn't pass gas or stool for days. I wish I had known about celiac when I was diagnosed with hashimotos disease in 2000, but as it was I had to approach my endocrinologist about testing for it in 2008. I guess I can consider myself lucky that the IgA tTg was positive since no other tests were done and I didn't know any better at the time or I may still be miserable.

[Reba32]

yeap, I always had constipation to the point that I would pray to get food poisoning just so I would get some diarrhea to get rid of it all!

Every doctor I ever saw said it was IBS, and told me to "eat more whole grain fibre" and take a laxative. Which of course, just made it worse. For the 5 years or so before I went gluten free, I was bleeding from fissures and in constant pain. When I did the 8 week gluten challenge, the bleeding started all over again. Not pleasant.

One book I have called "The Gluten Connection" by Dr. Shari Lieberman, says that statistically only about 35% of Celiac paitents present with diarrhea, and yet it is still considered the be-all-end-all symptom that doctors consider. If you don't have diarrhea, you can't possibly have Celiac according to some doctors! And some won't even bother to test you for Celiac if you don't have diarrhea.

And I can attest to that way of thinking by the GI I went to. They kept asking me how often I get diarrhea, and I kept saying NEVER! I'm always the opposite. They were boggled (probably still are) that my biopsy actually proved Celiac

If you're still having difficulties (it can take a while to be "normal") make sure you're getting enough dietary fibre (I eat flax meal every other day), and take a magnesium supplement. I was taking a 250mg supplement, but recently increased it to 500mg and now no more pain when I'm going!

[i-geek]

yeap, I always had constipation to the point that I would pray to get food poisoning just so I would get some diarrhea to get rid of it all!

Ha, that sounds familiar. Wed. night my husband suggested that I go and eat a bunch of high-lactose food to get things moving. I actually seriously considered it before realizing that if it didn't work, I would end up in even more pain and bloated up like a goodyear blimp.

Every doctor I ever saw said it was IBS, and told me to "eat more whole grain fibre" and take a laxative. Which of course, just made it worse. For the 5 years or so before I went gluten free, I was bleeding from fissures and in constant pain. When I did the 8 week gluten challenge, the bleeding started all over again. Not pleasant.

Yep, also sounds familiar. Why in this country does "fiber" automatically equal "whole wheat" to so many people, including doctors (who should know better)? I've had people ask me since going gluten-free how I can possibly get enough fiber since I don't eat wheat. *sigh* *headdesk* About 5 years ago I ended up having an emergency CT scan for severe abdominal pain. Nothing serious was found (of course) and I was told to go home and eat fiber. In retrospect, I actually did feel better because I lived off a big pot of bean-vegetable soup for the next week. No gluten.

[Reba32]

I dunno, but they usually suggest that you switch to whole wheat bread, whole wheat pasta, etc etc etc...when in reality, flax seed meal and psyllium are much better options for bulk fibre!

I guess they're just not very imaginative when it comes to food.

[sandsurfgirl]

If it's really bad, a plain old water enema can help.

[SLB5757]

Yep I've had that too. I've had undiagnosed celiac for my whole life and got diagnosed recently at age 40. I've had all sorts of different phases with it over my lifetime, but the C has been predominant in much of my life.

I saw in your siggy that you came up positive for RAST test allergy to wheat, barley and rye, so does that mean that you have to worry about anaphylaxis? Do you have to carry an epipen? Do you have the celiac autoimmune disease in addition to the allergy or is it all allergy? Sorry just being curious.

sandsurfgirl...

Yes I carry two epi-pens. Unfortunately I have multiple RAST positive allergies. The best answer the allergist had for me was to "not eat the foods I am allergic too", but there are too many to really avoid - so I eliminated just the gluten grains so far. I tested at the highest allergy (4++) to potatoe, corn, soy, nuts, beans, tomato, carrot, celery and many others as well...but how can one really eliminate all of those and live? I still have tummy issues daily and I am sure it is because I am still eating the above mentioned foods because I do not know what else to do. In my town an appointment with the gastro takes 3 and 1/2 months to obtain.

[SLB5757]

I went to the ER once doubled over in severe pain. The curtain on my bed was open a bit and I could see the doctor across the way looking at my xrays. It was quiet in there so I knew they were mine. He said "Oh my God!!" and called the nurses over. They were all pointing at my x ray and one nurse said "Whoa!" I was freaking out thinking I had cancer or something deadly.

Then the doc comes over and says "Have you been eating a lot of Barbecue?" I was like "Umm huh?" Then he says "Well it's summer. Have you been eating a lot of beef from the grill?"

Again I was puzzled and the he told me I had the worst case of constipation he had ever seen. He said "Well, ummm you have a lot of stool." I was mortified and so upset that I spent 3 hours in the ER and was in so much pain from a simple case of constipation.

I had no idea back then in my early 20's that it was celiac and that I was in for many more years of that nonsense before I would find out why I had the "worst case of constipation" the doc had ever seen. If only he had a clue back then to think that it was abnormal for an otherwise healthy young woman to come in with that and checked me for celiac.

Sounds like your symptoms are so similar to what I have been experiencing! I too (three weeks ago, then two months ago) have been to the ER and after numerous tests they let me know I was "full of stool". They showed me the xrays...it wasn't pretty. Of course this was after they swore it was ibs and gave me a shot of bentyl (which slows things down even more!), and a "gi cocktail" (that did nothing for the "pain".

[SLB5757]

yeap, I always had constipation to the point that I would pray to get food poisoning just so I would get some diarrhea to get rid of it all!

Every doctor I ever saw said it was IBS, and told me to "eat more whole grain fibre" and take a laxative. Which of course, just made it worse. For the 5 years or so before I went gluten free, I was bleeding from fissures and in constant pain. When I did the 8 week gluten challenge, the bleeding started all over again. Not pleasant.

One book I have called "The Gluten Connection" by Dr. Shari Lieberman, says that statistically only about 35% of Celiac paitents present with diarrhea, and yet it is still considered the be-all-end-all symptom that doctors consider. If you don't have diarrhea, you can't possibly have Celiac according to some doctors! And some won't even bother to test you for Celiac if you don't have diarrhea.

And I can attest to that way of thinking by the GI I went to. They kept asking me how often I get diarrhea, and I kept saying NEVER! I'm always the opposite. They were boggled (probably still are) that my biopsy actually proved Celiac

If you're still having difficulties (it can take a while to be "normal") make sure you're getting enough dietary fibre (I eat flax meal every other day), and take a magnesium supplement. I was taking a 250mg supplement, but recently increased it to 500mg and now no more pain when I'm going!

I used to have a bowel movement after every meal growing up. Literally some days it was much more often than three times. I was always 92 lbs. or less all the way until I was 22 and had my first child. After that I was 102 lbs. I still had bowel movements 4-6 times a day up until I was 28 and had my second child. Once I had him I had 6 weeks of constant diarreah, a 10 lb weight loss in a month that too me down to 92 lbs again, and then the constipation started after that 6 week diarreah bout. Since the age of 28, I have had constipation. If I do ingest wheat my insides literally shut down for 4-5 days then I can finally go a few times on that last day and then will be fairly normal for a while. I will try the magnesium. Thanks!!

[farmwife67]

I am newly diagnosed as gluten sensitive through stool testing. I have suspected for a year or two since my great niece's diagnoses of celiac disease. (researched a lot since then) Constipation is also a symptom of mine, I had been gluten free for 2 weeks, but hadn't received my results back yet from enterolab, so I felt guilty not taking communion and boy did I pay, on my way home from church I could feel the colitis pain (for some reason doesn't always give me diarrhea) Then, the rest of the day and the next day I had constipation. Now I know why I had such bad hemmorhoids! My energy level has increased tremendously after 3 weeks gluten free. Hoping my thyroid levels will become normal so I can quit taking 2 pills a day.

[Reba32]

I tested at the highest allergy (4++) to potatoe, corn, soy, nuts, beans, tomato, carrot, celery and many others as well...but how can one really eliminate all of those and live?[/quote}

I did whn I was a kid, and again in highschool. If a highschool kid can do it, you can!

Easy, you quit eating the foods that make you sick, and use a bit of imagination and find foods that you *can* eat.

When you go shopping, don't look at a list of foods you can't eat. Make a list of foods you can eat, and a list of foods that you've never tried before (that don't fit into the categories of your allerigies) and committ to trying something new at least twice per week.

So, you can't eat gluten, or soy. How about rice or quinoa? There, you can still have pasta. Can't have tomato sauce, but you can probably have cheese sause or cream sauce. No legumes? pffffffffft, who needs 'em? Corn is also disgusting, and way too high in carbs anyway. Same with potatoes. I haven't had any for over a year and a half, quite happily. And I used to eat potatoes pretty much every night for supper. Don't miss them one little bit. Turnips are nice. Much more flavourfull too.

It can be done. You just have to do it.

[SLB5757]

ame='SLB5757']

I tested at the highest allergy (4++) to potatoe, corn, soy, nuts, beans, tomato, carrot, celery and many others as well...but how can one really eliminate all of those and live?[/quote}

I did whn I was a kid, and again in highschool. If a highschool kid can do it, you can!

Easy, you quit eating the foods that make you sick, and use a bit of imagination and find foods that you *can* eat.

When you go shopping, don't look at a list of foods you can't eat. Make a list of foods you can eat, and a list of foods that you've never tried before (that don't fit into the categories of your allerigies) and committ to trying something new at least twice per week.

So, you can't eat gluten, or soy. How about rice or quinoa? There, you can still have pasta. Can't have tomato sauce, but you can probably have cheese sause or cream sauce. No legumes? pffffffffft, who needs 'em? Corn is also disgusting, and way too high in carbs anyway. Same with potatoes. I haven't had any for over a year and a half, quite happily. And I used to eat potatoes pretty much every night for supper. Don't miss them one little bit. Turnips are nice. Much more flavourfull too.

It can be done. You just have to do it.

I really do not see the need to say something like "if a highschool kid can do it, you can". You do not know my situation or list of 4++ allergens. Seriously, I would never try and make someone feel bad (who is already feeling horrible). I think that you must be in a bad spot in life if you need to make someone else feel bad to get through your day.

These boards should serve as support for people who truly need it and comments like these shouldn't be the kinds of responses we are posting.

Without asking my complete list of allergens you went on a tryant saying its easy to basically avoid my allergens. I have been to three allergists and two nutritionists who beg to differ. They only look at me with sorrow in their eyes and appologize they can't offer me any better suggestions. So please do not assume you know my situation and please do not post mean spirited somments to my posts any longer.

[Chrisco]

I have been gluten free for 2 months now and my constipation has cleared up completely. I too had a doctor do an xray and tell me she saw that I was full of stool. I was living in Hawaii at the time and went to a family friend who gave me a lomi lomi massage. He did the massage on my tummy and when he was massaging my lower right side of my tummy we could hear a bunch of gurgling. He told me that I would probably pass a lot of gas on the ride home however nothing happened that night. Then the next day I spent the day in the bathroom. When I went back to the doctor she asked what I took to get everything out. I told her about the massage and she said that wasn't possible. But honestly I did not take anything and I don't think it was just a coincidence that it cleared up within 12 hours of getting the lomi lomi massage. By the way these were the doctors who had been telling me since I was a kid that my symptoms were all in my head. Any way just thought I would share that story. If anyone has access to someone who knows lomi lomi it definitely helps when things get very backed up.

Sorry SLB to hear about all your allergies. I can't imagine having to figure out how not to eat so many things. Gluten has been so tough for me, compared to what you have to go through I feel lucky that I only have one food sensitivity. I hate that people think it is so easy to give up a food let alone a number of foods. I wish you the best of luck. I think you will be overwhelmed at first but in no time you will be a pro at figuring out what you can and can't eat.

[mushroom]

SLB5757, I don't believe Reba32 was trying to put you down, be mean to you or make you feel bad. She was, I think, trying to get you to see the glass as half full instead of half empty.

So far we know that you are intolerant of the following:

"I tested at the highest allergy (4++) to potatoe, corn, soy, nuts, beans, tomato, carrot, celery and many others as well..", at least by laboratory testing. What are your experiences in eating these foods? Some of us "test" positive to things we can tolerate quite well, so it always pays to verify by personal experience.

But even if these are all valid intolerances, most of these I avoid also. Gluten, soy, corn, ALL legumes, peanuts, ALL nightshades [potatoes, tomatoes, peppers, eggplant), beets, citric acid (limes, lemons, oranges included); and I used to be lactose intolerant but have now healed enough that I can have all dairy. And I do not feel deprived. It is awkward to dine out, but eating at home I have no problem finding things to eat. Almond butter instead of peanut butter for example (I know you said you tested positive for nuts, but that's just an example of my adjustment--you will have to make your own).

She actually gave you good advice, to focus on the foods you can eat rather than dwelling on those you can't. Sure, you can go through a grieving process of what you're missing out on, but if you let that last too long you just make yourself miserable instead of getting on with living. So do make up a list of all the things you can eat and start devising menus around those things. You will be surprised when you put your mind to it how many things you can have. Here is a list of my foods I posted earlier today:

"So that leaves for me all meat, fish and seafood, all fruit, all the other vegetables, the squashes and brassicas, sweet potatoes, carrots, turnips, rutabagas, parsnips, lettuces. avocado, swiss chard, mushrooms, the gluten free whole grains like sorghum, amaranth, quinoa; and buckwheat and millet (some can have a problem with these) in addition to the starchy gluten free grains. I try to use as many of the whole grains as possible. I use almond butter instead of peanut, eat lots of nuts, lots of eggs. I do cheese and yogurt and now ice cream But I cannot do beets for some reason."

Now, before you protest, I know your list will be different, but it will probably be just as long because you can probably eat things I can't. So do try to put a smile on your face and develop a can-do attitude, or else you are going to be miserable

[Tummy Frustration]

I guess this would be one of my main symptoms after I eat wheat. Its almost as if my bowels completely shut down for four days (sometimes three), followed by a day or two of going to the bathroom three times or more, and then it returns to normal again. It is a very noticeable pattern. Of course I get very anxious, extremely tired, almost feel like I have a "mask" over my eyes, and get severe stomach pains as well following any accidental consumption. Just wondered if others are completely constipation predominant. I really feel like my system goes into 'shut down' mode rather than "get it out" mode as most celiacs suffer from.

I can totally relate to you too. I fall into the category of being either Celiac or gluten intolerant and have dealt with constipation for yrs. now- with the occasional stoimach attacks in which I have diarrhea (which is rare). For about a yr 1/2 (stopped in Oct.), I actually went for colonics monthly and I could not believe the amt. that came outta me. I was literally 5 lbs. lighter after each one, but then I would think I'd be eating "healthy" the following day and would bloat right back up again.

[Reba32]

my post was not in the least mean spirited. That would imply that I inteded to be mean to you, which I most certainly did not.

I did however intend as mushroom said, to suggest to you that rather than dwell on what you cannot have, focus on what you can have.

And if you have doctors and nutritionists looking at you like you're a poor lost soul with no hope, then they have some serious problems themselves and abslutely NO bedside manner, and NO food knowledge whatsoever!

When I was in highschool I had a list of foods as long as my arm that I could not eat. Seriously! How difficult is that for a highschool kid do you imagine? I still managed to avoid all those foods, and still ate quite a lot of other foods.

In the whole wide world, there are so many food choices I'm sure if you just go out and find them and try them.

[passionfruit877]

I guess this would be one of my main symptoms after I eat wheat. Its almost as if my bowels completely shut down for four days (sometimes three), followed by a day or two of going to the bathroom three times or more, and then it returns to normal again. It is a very noticeable pattern. Of course I get very anxious, extremely tired, almost feel like I have a "mask" over my eyes, and get severe stomach pains as well following any accidental consumption. Just wondered if others are completely constipation predominant. I really feel like my system goes into 'shut down' mode rather than "get it out" mode as most celiacs suffer from.

Ah, thats such a good way of describing it! It's almost not like constipation, its more like I had NO urge for go for 3 or 4 days. Doctors didn't understand. They kept putting me on stuff like Miralax and Metamucil that did nothing, because I don't know that its true constipation. It came out almost kind of more toward the diarrhea side. I was so sick of doctors saying I wasn't getting enough fiber, that was probably making it worse.

[munchkinette]

Yep, another one here. When I get glutened, things don't work for 3-7 days. (My average for all glutening symptoms is about a week.)

My record in college was 10 days, even with tons of coffee and exlax. That definitely sucked. That was before I'd heard of probiotics, which are awesome.

[hypersof]

Yep, another one here. When I get glutened, things don't work for 3-7 days. (My average for all glutening symptoms is about a week.)

My record in college was 10 days, even with tons of coffee and exlax. That definitely sucked. That was before I'd heard of probiotics, which are awesome.

same for me (the "shutting down" of my digestive tract, it's exactly as described, amazing!)

so far I'm only 1 month gluten-free, that cleared up completely after 2 weeks, felt fantastic -but got glutened last week and am still recovering...

Sophie