# It was supposed to be over at "Gluten Free!"



## AnnaChristine18 (Apr 24, 2014)

This is my story. If anyone could give me ideas, put in input, ANYTHING, it would be greatly appreactiated. I'm running out of hope. Bear with me, I know it's long but I just need to get this out to people who understand.

My symptoms started December 7th 2013.

They appeared out of the blue. One day I felt so blissfully healthy and the next day I was in horrible pain. It was like waking up into my new life. I'm only 17. Every day I'm suffering so badly from the constipation, the BLOATING, the gas, the pain. Nothing seems to help.

December 27th I was diagnosed with Celiac Disease after bloodwork and a biopsy and was told that because my intestines were in pretty good shape considering, I would start to feel better almost instantly after going gluten free. That was 4 months ago and I don't feel any better in any little way! I'm not only gluten free, but dairy free and even grain free. I'm on an (almost) paleo diet and have been for 2 months with no change. I was told by doctor after doctor to just "give it time, you'll get better soon" until one day I was told "You have ibs and there's no cure."

I'm so depressed because of this horrible illness! I was taken out of school to be homeschooled, I rarely go out, I don't go a day without crying. I'm not myself anymore. I used to have so much life...

I used to have what I thought a perfect body (Yes, I was cocky.) Yea, that's gone now. I've lost so much weight I look sickly, but my stomach is constantly bloated. I used to have such a flat stomach and now I look 6 months pregnant even when I don't eat a single thing! 2 days ago I started a low FODMAP diet but I'm beginning to think ALL food is problematic for me! Summer is coming up but it won't be any summer for me.

I understand I'm preaching to the choir. I know you all understand. That's why I'm here.

I'm trying to figure out something else it can be, something else I can do. I refuse to believe this is the start of my new life. It appeared so upbrupty and for a reason! It was the Celiac Disease. So why am I not healing whatsoever? I'm not still eating gluten. I even got a bloodtest to be sure.

I've been taking Rifxain for 2 weeks to see if it's SIBO but surprise, surprise there's still NO change.

Before I found out I had Celiac Disease and became crazy about health and nutrition, I was the kind of person who ate ice crea every single day. I'd have doritos for breakfast and remained 100 pounds no matter what. I didn't even need to exercize. Now I do everyday but nothing helps. I look and feel like a whale. And not only is it ugly but it's painful. I used to do a lot of recreational drugs and drink a lot. I used to eat and act like someoe who's SO unhealthy but my body seemed perfectly healthy. I was extremely depressed however. I also started taking the Natazia birth control pill about 5 months before this all started happening. Could that have any effect? I stopped taking it last night after reading something about the connection between ibs and the pill. I'm trying anything. I'm on so many different supplements. Fish oil, L-Glutamine, Digestive Advantage Constipation Formula, Acidophilus probiotics, and I take digestive enzymes with every meal.

What more can I do? What can make this all go away? If this is supposed to be the rest of my life I don't want to live.


----------



## Kathleen M. (Nov 16, 1999)

How often do you eat? Do you try the skipping a bunch of meals because I feel better in the short run routine? Because things will then be much worse when you finally do eat. as the "move things along" signal the colon gets will be much bigger than if you were eating 4-5 small meals (300-400 calories a day)

Also skipping meals means the fewer times a day your colon gets the "move things along" signal so that can make the constipation worse.

If you are exercising a lot to try to get that belly flat are you drinking anywhere near enough water to support that. If you are dehydrated most of the time that will make the constipation worse.

Having done a lot of drugs and drunk a lot of alcohol at such a young age you may have mucked up some of the nervous system (which is where IBS often is, the nerves got damaged a long the way). So things may be sending the wrong signals, or may be reacting either way too much or way too little to the signals. If you are now depressed and anxious that is going to further set off the nervous system in all the wrong ways.

If there was damage to the small intestine (even if not bad) it can take up to 6 months of gluten free eating to really get that all healed up. And it's damage can sometimes effect the nerves and damage them, so you see how the cycle goes.

Birth control pills can interact with IBS so you'll know in a couple of months if that change helps or not. It probably won't be instant, and it depends on how your IBS reacts to your natural hormone fluctuation

What kind of digestive enzymes? The only ones shown to have any benefit for bloating are the ones with pancreatin in them. So the all plant based ones may not make as much difference. Usually taking at the beginning of the meal is most helpful. Some people find fennel seeds (either eat a few at the end of the meal or brew a tea to have at the end of the meal) helps. You could try gas-X or other simethicone containing product with each meal for 3-4 days and see if that helps. You need to get it into the colon to see much benefit.

What kind of exercising are you doing. If you walk that can help get the colon moving things, as can things like yoga where you twist the torso.

Do you strain a lot, like more than a few minutes, and more like an hour to pass a BM? then you may need to have the pelvic floor tested so you can release gas and stool more easily.

Have you tried a magnesium supplement every day to keep the stool softer and easier to move?

You may also want to try tracking the symptoms. Sometimes things are a little better but it doesn't feel like things are any better (especially if anxious or depressed) so you may miss things that each help a little bit and when you get them together may make a big difference.

If you are anxious or depressed talk to the doctor, some of the treatments for those also help the nerves in the gut behave better. If it is "just" stressed out then you may want to work on meditation or some mind-body things like clinical hypnotherapy (that can also make the nerves in the gut behave better) to manage that.

FWIW, getting healthy and clean/sober now will pay off when you are middle aged compared to people who can get away with partying and eating doritos for breakfast for another decade or two before things fall apart. A lot of their wake up call ends up being a week in the Intensive Care Unit rather than something that is lot less drastic.


----------



## AnnaChristine18 (Apr 24, 2014)

Sorry I should have specified I am not currently drinking any alcohol or doing any drugs. I haven't since I got sick in December.

I do a lot of jogging and walking, as well as stretches every day. No I don't skip meals. On the contrary, I sometimes eat more than I should. I have to eat smaller meals than I used to but I have a problem with well... "emotional eating." And I'll eat bigger portions than I can currently handle. It's not an everyday thing but it happens about once a week.
Straining isn't really the problem. It's the lack of a need for a bowel movement. I just don't get the urge. I do more than I did before since I started taking Digestive Advantage Constipation Formula. I go every other day now which is really good. My biggest problem is the excessive gas that gets stuck in my abdomen causing all this blaoting! I'm so bloated it hurts to laugh or cry or even take a really big breath. I've heard mixed things about Gas-X. Would you recommend it? The digestive enzymes I take are called "Super Papaya Enzyme Plus" and were recommended to me by my personal nutritionist but I don't know how well they really work. As of now I don't think anything works


----------



## Kathleen M. (Nov 16, 1999)

Papaya only ones may not work as well as the animal ones that were used in the small clinical trial. Check and see if they say pancreatin in them (or claim they are all plant). Plants use different signals from animals and they don't have digestive tracts.

Gas-X is pretty safe, but it only helps me if I take it with something that may make gas later on. The gas-X in my stomach does nothing for gas in my colon.

I thought the drugs were in the past, but if they messed any nerves even a bit it may not be instantly healed and back to normal as soon as you stop. The good news is that you stopped so are no longer adding to any damage.


----------



## Nojokeibs (Apr 14, 2014)

The digestive enzyme I take is: Enzymedica Digest Spectrum, and it works well for me. It includes the active ingredient in the name brand Beano, and lots of other enzymes, to digest lactose, starch, fat, and protein, plus a few others I haven't figured out yet. It helped me more when I didn't know what to eat. Now I feel like I'm cheating if I take it because it can mask poor eating habits. Still life happens, and I'll occasionally have something I shouldn't or go out to a restaurant with friends, etc..

I've figured out my diet pretty well, but I did it in a weird way. To make a long story short, the SCD and FODMAP diets are my best friends, and I also use the Ketogenic diet (ie. Atkins on steroids) when things get really bad. I've only recently confirmed which of the FODMAPs are the ones I need to watch out for: the polyols and the fos/gos ones. I can manage the others... Fructose in excess of glucose just makes me burp, but it doesn't get stuck so it's fine (other than too much sugar is bad...). Mannitol has to be in huge amounts before it bothers me and I simply don't eat that much of it.

Hopefully, this is just a passing phase you're going through and it will clear up with exercise and some TLC for your body. You seem to be doing a lot of good things (Omega3's, etc...) and it sounds like maybe this wasn't something you've had happen before. So maybe it will heal and all will be well. If it drags on though, you might find that you need to identify which foods are hurting you and avoid them.

A much simpler diet to try first is called the BRAT diet. Bananas Rice Applesauce Toast (BRAT). For people who don't have chronic diarrhea, this is useful as a limitation on which carbohydrates to eat for a temporary time. Some people find that useful, others not so much. For me, the toast part has me feeling sick, but the others I'm okay with. At least it identifies 4 safe-ish carb foods for most people.

If you decide to try SCD or FODMAP though, SCD is centered on a book called "Breaking the Vicious Cycle" and FODMAP is a recent discovery by researchers at Monash University. There is also a FODMAP diet book you can just buy at Amazon if you'd rather do that than read online.

These diets can be helpful, but in the end, we do need treatments to be available, even if we never go to a doctor and ask for them. At this time, all the treatments center on "getting more water in the gut" to solve constipation. Yet, there was a motility drug called Zelnorm available for a while, and it was taken off the market. It was the only one and we're still waiting for a new one.


----------



## AnnaChristine18 (Apr 24, 2014)

I just don't understand how this happened. All of a sudden I woke up one day feeling like hell, two weeks later I found out I have Celiac Disease but that it was "caught early" and minimal instinal damage was done. Here I am 4 months later feeling the same, if not worse. Just...why? 

I'm doing everything I'm supposed to be doing. I refuse to just accept that I have ibs and that's all there is to it. This came on so suddenly, there has to be reason behind it.

BTW I finished the anti-biotic and it didn't help/:

Thoughts, anyone?
THank you both


----------



## Kathleen M. (Nov 16, 1999)

Go back to the doctor and tell them the antibiotics and the gluten free diet are not working. Not that I have any idea what else for them to test you for, but maybe they can have you try something else (sometimes you need a different antibiotic).

If the one and only thing that was causing symptoms was celiac then the diet should help. If the one and only thing causing symptoms is SIBO, then the antibiotics should help at least for awhile, but you may need to take more than one to find the thing that kills the bugs you got. Not all antibiotics kill everything.

Do not assume that if the doctor did one thing and it didn't work there is not one other thing they can do and you should never report back in. They only know to try plan B or plan C or plan D if you tell them plan A didn't work.

FWIW, IBS often strikes out of the blue (usually you get a GI infection and you don't heal up properly after you clear the infection), it can also go away, but usually does that if you are willing to do some IBS specific treatments (like the clinical hypnotherapy) or just wait it out while you control it with diet, medications or supplements. But that would mean you might have to accept you have it (unless you can convince yourself treating it like IBS while insisting those treatments must be for a something else), but I don't know that trying everything that isn't for IBS and never trying anything for IBS will help it go away any faster.


----------



## AnnaChristine18 (Apr 24, 2014)

So can Celiac Disease cause ibs? Because that's what's seemed to have happened.

My doctor didn't mention any other treatments of things to test for. I asked about testing for parasites or pancreatic deficiancy but she said that constipation isn't a symptom for for either of them and I shouldn't bother. She recomended yoga. That was her advice and that is all.

I've never felt more alone in my life. This is supposed to be the time I'm enjoying and starting my life. I'm turning 18 next month and I feel bloated, tired, and in pain. I have no sense of freedom or excitment for my upcoming birthday. I'm so depressed because of all this. It just doesn't make any sense!


----------



## AnnaChristine18 (Apr 24, 2014)

Is this one of those "time heals all wounds" sort of thing? Like did the Celiac Disease cause ibs and all I need is more time and it'll heal? Because I'm doing everything right and more and nothing works. This wasn't supposed to happen... I used to have so many plans for myself and now none of them mean a thing to me because of celiac disease and ibs.


----------



## Kathleen M. (Nov 16, 1999)

Well other damaging inflammatory processes can trigger IBS (often people with IBDs have IBS symptoms when all the ulcerations and inflammation are controlled by powerful immunosuppressive drugs).

Inflammation from a GI infection can also trigger IBS, and it is rare someone makes it to 18 and never, ever had a GI virus or food-borne illness of any kind. That is the most common.

FWIW somewhere around 5-10% of your classmate either have it, or will get this in the next few years, so you are far from alone.

Add in drugs that disrupt nerve function (which is why you get high from them) can sometimes cause longer term damage and that could also have tipped the scale. Although you can certainly get IBS without ever having done any drugs.

IBS often does fade over time, so it can heal. Yoga actually is a good mind-body therapy for a lot of things and poses that twist the torso tend to be good for helping stool move along and ease constipation so it wasn't some I'll just say anything to get her out of the office, it actually could make a difference for you. It also helps with the mental stress (which will keep the symptoms going rather than allow them to heal) and can help with the negative thought patterns (the it wasn't supossed to be like this, my life will never have any meaning because I got an illness young, etc) that also tend to prevent the nervous system from healing.

There are treatments for chronic constipation and if your doctor insists there are no supplements, medications, OTC remedies or prescriptions to treat chronic constipation...you may want to find another doctor. Which of the many treatments that may ease your symptoms will work for you is hard to know. But usually most people with IBS find something that makes it a lot more manageable. It can take finding that part of you that is solution-focused and finding out how to deal with the negative emotions and being committed to what is best for your own well-being and the long-term benefits. Unfortunately you are having to learn this at 18 when most people feel you should be carefree and out doing as many damaging in the long-term although they feel good in the moment health behaviors. However, they are the lessons life insists almost all of us learn, and generally the younger you learn them the much easier your middle age will be.

While it wasn't IBS I generally never did get away with anything that most people think you must do to have fun when you are 18 (I can't have more than 2 drinks, I can't stay up late, I can't function on a unhealthy diet). I'll tell you from this end developing healthy health behaviors early really does pay off in the long run, even if it makes you feel like the no-fun person in your circle of friends in the short run.

I think you'll be shocked how many of your peers suddenly take the healthy path over the next few years, or who looks like they are 40 by the time they are 27 because they aren't taking care of their youth (why all us old people say youth is wasted on the young, when you have it you tend to squander it, and once it is gone you realize how much potential it had). I know it doesn't help to make you feel better, but I will tell you the healthy living thing does pay dividends for the rest of your life and you may eventually be glad you started that earlier than some of your peers.


----------



## Nojokeibs (Apr 14, 2014)

Yoga and parasites:

Doctors may not be aware that yoga has changed from a mentally focused stretch-with-tension exercise to a frenetic keep-the-pace continuous motion exercise. If you are thinking of yoga, my preference is to avoid the Ashtanga classes and look for a classic yoga stretch class. When I was a youg'un they were always free at colleges, and not just for students. It wasn't really popular yet. The prices today make me glad I learned back then. Some fitness clubs will have a yoga class also, and often the classes can be attended even if you aren't a member (for a fee, but free if you are a member).

I've tried the parasites discussion with several doctors myself. I think they think people are paranoid about it. There's even a psychology syndrome named for it. So my decision, since I was getting no professional help was to see what amazon had to offer. It's so easy on amazon to get anti-parasite drugs, completely legally, OTC, that I've decided there's no need to pester a doctor about such confusing matters. It just hurts their little heads. I got a dose of ivermectin and one of pyrantel, and I took them two weeks apart, and figured I had it covered. I did feel a significant energy difference when I did that. I think maybe there was something there. There is no proving it though, if doctors refuse to look.

Research the available antiparasite OTC meds and see what they cover. Probably you'll find something that sounds reasonable and that you can figure out how to dose correctly. Most of them are meant to be used in animals so you're unlikely to find many that are perfectly labelled for human use. I still think this is the easier route than harassing a deaf doctor. I did not repeat the procedure since I think I've stayed away from possible sources since then.

Warning though, dosing ivermectin is tricky, so calculate carefully and recalculate a few times before taking. It can paralyze muscles if you take too much.


----------



## AnnaChristine18 (Apr 24, 2014)

But..the Celiac Disease? Did it cause my ibs? Is this refractory Celiac Disease?

Also.. does anyone have any experience with the SCD diet?


----------



## Kathleen M. (Nov 16, 1999)

Maybe, Maybe not. I can't prove it did, I can't say it could not have played a role.

Maybe you had some damage from earlier GI infections and the Celiac becoming active set it all off.

You said you proved you were 100% gluten free, and most who don't clear up still have some hidden gluten in the diet.

I'm not sure "refractory Celiac" is different from "and has IBS". Just usually if there is something other going on they tend to blame it first.

Now are you having mostly IBS symptoms (GI distress) or are you just anemic, with brittle bones and infertility which are the things Celiac causes that IBS does not?

Some people find the SCD helps, some find it impossible to maintain.


----------



## Nojokeibs (Apr 14, 2014)

I don't have celiac, but I do follow SCD, if you click my "history" link it will take you to my blog entry showing my diet, etc. I don't eat wheat for many reasons, but not because of celiac. My experience of SCD was that it provided excellent recipes for cooking food that wasn't as low carb as I had been eating before. While I felt fine on Keto/Atkins, I was very much aware that it was not a complete diet and it required that I take high doses of vitamins, and who knows what else I was missing out on. So SCD was great. There are two books I have, the original "Stopping the Vicious Cycle" and a newer one "A taste of Wellness." I soak all nuts though, then dry them in the oven. That is to remove phytates. It's also a holdover from when I was a raw vegan (yes, I've tried everything).


----------



## AnnaChristine18 (Apr 24, 2014)

Well, my Celiac symptoms were always just GI issues. I never had problems with anemia or infertility (to my knowledge at least lol) or brittle bones. It was always just very, very sever GI issues.

I'm really hoping the SCD diet works. I'll try anything at this point I don't even care. I just wanna get better.

Is it unheard of for Celiac Disease to set off ibs? My aunt had ibs like 10 years ago (but not as severe as mine) and she said she did a lot of thigns and got better in a year. Is there this kind of hope for me? I need to see some form of hope or I'll lose my mind. Even if it was ibs that just happened to appear after celiac disease showed up, wouldn't I have gotten a little bit better from going gluten free? I mean gluten is what triggers the celiac inflammatory response. And actually, according to my doctor I didn't get the right test done. I got a bloodtest thinking it was going to prove whether or not I'm still being glutened but I didn't get the right one -__-
But as far as I'm sure I haven't eaten anything that was cross contaminated. I'm extremely careful about that (you might call it paranoid)

However, if there is a way that a very minimal amount of gluten was still getting into my system, would that be enough to cause this much pain all the time? So much that it seems I haven't gotten any better whatsoever after going gluten free?


----------



## Kathleen M. (Nov 16, 1999)

Gluten is the thing that triggers Celiac, a fair number find they have issues with being lactose intolerant, but that seems to be a separate thing, but they may be more reactive to the gas from the lactose than someone who is "just" lactose intolerant. Like someone with IBS reacts a lot more to the gas from lactose than people who test positive for lactose intolerance but have to really over do it before they see symptoms.

It is worth double checking the diet if you don't get a lot better when you go gluten free. It can be hard to find all the gluten if you tend to eat any industrial food. And some people find very small amounts of cross contamination can cause a lot of GI distress. A friend of mine with Celiac we had to be careful when we cooked spaghetti noodles on the same stove as gluten free noodles as if you stuck the spoon in the wrong pot you could cause him big trouble. Now he was find when completely and totally gluten free but even a trace amount caused him huge problems.


----------



## notnph (Jul 18, 2013)

Hi AnnaMarie, not trying to sell you anything here, I have no affiliation whatsoever but this page quickly conveys a lot of what I've learned over the last couple years about IBS/SIBO/Celiac/Leaky Gut and might help you out: http://solvingleakygut.com/early-bird/?q=/order

Also, this video by dr. Alessio Fasano is great: 




As for your mood, I totally get the frustration as do many on here, the thing that helps me is exercise, no matter if its weightlifting, hockey, biking or 15 minutes of yoga, some chinups or air squats, any good day I have had is during a time a when I'm exercising daily and even more so when I'm social in a setting that is comfortable for me.


----------



## Nojokeibs (Apr 14, 2014)

Wheat is evil. That's a great video explaining why. People had plenty of food before wheat. Consider what people ate before wheat, or people who just never eat wheat (Asians, Pacific Islanders, Siberian tribes, Alaskan tribes, some Mexicans who prefer masa to wheat).


----------

