Confused And Annoyed!

[LeanneMarie]

Hi everyone,

 

This is my first post. I was recently diagnosed with celiac in early December 2013. I finally saw an awesome  gastroenterologist in November after an entire year of mis-diagnoses from SO MANY specialists/doctors and ridiculous other ailments...chronic headaches and flu-like symptoms, foggy headedness, sinus congestion, the list goes on and on and on... but I never had digestive symptoms until this past fall. Then out of nowhere I was really "backed up", which I thought was just a fluke for a little while, but got really bad while on a vacation across the country. I came home, saw the gastro doctor, and she added a blood test for celiac onto a larger lists of blood test, which came back (shockingly, to me) glaringly positive. After a gene test (also positive) and a positive endoscopy as well (moderate damage), I was fully diagnosed with celiac, no doubt about it. 

 

So obviously right after my endoscopy I started eating gluten free, and have been finding much relief from the headaches and foggy headedness even a month into eating gluten free (I'm frustrated right now with all the changes, but that's a different story). I also feel a LOT less fatigued, and have been feeling more well-rested. 

 

MY QUESTION has to do with digestion...My issues with the "c" have not cleared up. At all. For a moment I thought it was getting better/easier, but no, it hasn't. I also had a temporary bout of "d" on Sunday of this week after having a very dairy heavy meal the night before...I'm assuming that's what it's from. But then right away the "c" is back, and worse than ever. Gurgling, belatedness, and...nothing. Ugh. 

 

Can anything help? I bought ReNew Life "Fibersmart" supplements that have flax and probiotics....but I haven't tried them yet (just got them tonight). What else can I do? I'm just worried and frustrated, and could use any help you all have to offer. Thank you!

 

-L

[skullgrl]

Definitely start taking those fiber supplements - make sure they are gluten free and from a reputable source. Supplements can sometimes but iffy on their gluten-free status. When you start the gluten-free diet a lot changes in the core of what you eat and that can throw off your digestive tract. If you've ever had a dog or cat and switched their food suddenly you can see a rather um, powerful example of this. You really need to make sure you're getting enough fiber in what you eat, so more veggies and more fruit. A simple diet of mostly whole foods and not too much preprocessed stuff is the best at the beginning. (Wish I had come onto the forum sooner to realize that.)

[w8in4dave]

It will take time for your body to adjust to it's new diet.  just make sure anything you take is Gluten Free. 

[NoGlutenCooties]

I agree with the probiotics, fiber and patience suggestions.  Also be sure you are drinking plenty of water.  I rarely have problems with constipation but my mother (also Celiac) has had severe issues with it all of her life.  One simple thing we've found that really helps is to drink a teaspoon of apple cider vinegar in a glass of water.  It actually tastes pretty good.  Start with just a teaspoon though... I have overdone it in the past and let me tell you it works a little too well if you get too much.

[w8in4dave]

I agree with the probiotics, fiber and patience suggestions.  Also be sure you are drinking plenty of water.  I rarely have problems with constipation but my mother (also Celiac) has had severe issues with it all of her life.  One simple thing we've found that really helps is to drink a teaspoon of apple cider vinegar in a glass of water.  It actually tastes pretty good.  Start with just a teaspoon though... I have overdone it in the past and let me tell you it works a little too well if you get too much.

I am curious what apple cider vinegar does.

[GFinDC]

Hi Leanne,

 

It's going to take some time for your digestion to settle down.  There is lots of healing that needs to happen in your gut, and that takes time.  That's one reason eating a simple whole foods diet is important.  The less work for your body to detoxify foods and chemicals the better.  Plus you get better nutrition from whole foods than processed foods.  Water and fiber may help the C.  But it is more likely a result of inflammation and irritation in your gut.  The auto-immune attack in celiac disease does not stop on a dime when we quit eating gluten.  It can go on for weeks or months, the slowly taper off.  And then spring right back into action at the slightest gluten ingestion.  That's another reason to choose whole foods mostly.  It is much easier to avoid  hidden gluten when eating whole foods vs processed foods.   May people do have reactions to diary when they first go gluten-free.  The enzyme (lactase) that digests dairy sugar (lactose) is made by the villi lining the small intestine.  If those villi are gone or damaged, no lactase.  So it might help to avoid dairy for a few months.

 

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy if it causes symptoms.
Avoid sugars and starchy foods.
Avoid alcohol.
Watch out for cross contamination.

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/

[LeanneMarie]

Thanks for the responses, everyone!

 

I definitely had all kinds of tests done and confirmed as positive before starting eating gluten free (I was not about to give up gluten if I didn't have to! but turns out I have to...), and so far is seems to be helping all of the mysterious symptoms I was experiencing, except I feel like the digestion actually felt worse after quitting gluten. It's a tradeoff, I guess! I said I would do anything to not wake up with a pounding headache, aching body, and have energy / be able to feel rested again....and I got what I asked for, so far. 

 

I'm glad to know that hopefully patience and dedication will resolve the digestive issues...It all just feels strange because I feel almost more digestive-symptomatic than before I quit eating gluten. So I guess that I really am just able to feel what is happening now, more clearly than before, now that the other body drama has taken a backseat.

 

-I will definitely try the ACV water (I like the taste of it, too! kind of like kombucha).

-I checked the supplement for fiber I was going to take and there is nothing in it but ground flax seed and some probiotics, it seems safe and was recommended on this board by a few people in other threads as being helpful...I'll try it.

-I will also try and avoid most dairy since I'm pretty sure that the damage I had going on when I got my endoscopy is not healed up yet, and that would explain not being able to tolerate the dairy/feeling really messed up after eating a large amount of it on Saturday last week. I know yogurt is dairy and has probiotics in it, do you think it's worth it to keep eating yogurt for the nutritional benefit of it? I have access to goat milk yogurt too, which is way lower lactose, if that might be a better option.

-I got my vitamins tested and I'm on a raw iron supplement and vitamin D supplement now.

-I already cook most of my meals at home but since I live in New York City the not-eating-out is SO hard. Already tired of grilling waitstaff in even the sushi restaurants about their food preparation techniques and seeming like a psycho :-/ I am also sharing a kitchen with my boyfriend (we are both vegetarian for the most part, and sometimes eat seafood) who does eat gluten (although, not that much) and he is being very careful....we have tried to separate all the things in the cabinets in fridge, he makes extra sure to wash down the countertops and stove after cooking, we are going to get some separate cutting boards and wooden spoons soon so I don't have to keep using random plates to cut things on...I think I'm getting closer to having him try eating gluten-free with me, too.

 

All and all I've been very dedicated and have not caved once to the temptation of eating gluten! At least, not to my knowledge. I'm hoping there will be a point where I start to feel everything turning around...sounds like most people have that happen after a while (different for everyone). THANK YOU ALL for all the help so far! This board has been really helpful for learning about my symptoms and seeing that I have been feeling things that are "normal" for this diagnosis....and helped me to worry less Thanks again everyone! I'm sure I'll have more questions. 

 

-L

[NoGlutenCooties]

Re: the apple cider vinegar

 

I'm not sure what causes it to work - when I have more time I'll see if I can find any additional information on it.  It was something I read in a nutritionist/natural healing book.  It works gently if you don't use too much at once. 

[GFinDC]

Hi Leanne,

 

You can try taking lactaid type pills when eating dairy to see if it helps.  Just make sure they don't have any wheat, rye, or barley in them.  If it is lactose intolerance due to celiac damage the lactaid may help.  Some people develop casein intolerance (a dairy protein) which requires complete dairy avoidance.  That is not the usual thing tho.  The only way to know if completely avoiding all dairy will help is to do it.  At least for a week or two.

 

Going gluten-free is kind of a feel your way into it thing as far as other foods (besides gluten) goes.  You can take as strict or as loose an approach with non-gluten foods as you want.  The thing that seems to get people is eating the same food over and over a lot during the healing process.  Quite a few of us develop additional food intolerances beyond just gluten, and it seems like it is those repetitive foods that become problems.  So you might want to avoid getting real repetitive in your food choices at first.  Some of the foods people often report intolerances for beyond gluten are corn, eggs, nuts, nightshades, soy, dairy, in no particular order.  Being a vegetarian I suspect you may eat a lot of soy?  That might be something to cut down on for while too.  Or at least not eat it every day.

 

Later if you don't recover well after 6 months or so an elimination diet might be a good thing.  Elimination diets can help identify other food intolerances.  But give gluten-free a good 6 months before deciding there are other problems, and make sure you have 100% eliminated all gluten from your diet.  It's real easy to miss gluten hidden in vitamins, drinks, meds etc if you aren't used to checking them.  It takes while to get used to checking everything you consume, but it gets to be 2nd nature eventually.

[BelleVie]

Hi Leanne, something that helps me when I get backed up is using an enema. You can get them from the pharmacy. It feels kind of weird the first time you do it, but they work for me 95 % of the time to help get things moving again. 

[MarionG]

I used to have really bad C too. If you can I would recommend seeing a nutritionist familiar with people with Celiacs disease. After alot of trial and error, a combination of probiotics in the morning and a product called "Hydrozyme" with each meal plus a magnesium pill has eliminated the problem. C can be caused by a myriad of issues. For me it was lack of "good bacteria" to digest the food and a magnesium deficiency.  

[NoGlutenCooties]

I am curious what apple cider vinegar does.

 

w8in4dave -

 

I found some additional information about the apple cider vinegar.  One site attributes the benefits of it to the pectin that is in it.

Let me preface this by saying that these are nutritional, natural-remedy websites.  In my experience, there can be a lot of really good information on these types of sites as well as some information that is a bit “out there” and most has not been “proven” by the medical profession.  I find that this type of information needs to be considered carefully and taken in balance with common sense – not simply taken at face value in a vacuum.  That said, I have found natural remedies and healthy food to be more beneficial than most doctors and prescription meds:

 

This site talks about the benefits of apple cider vinegar as a laxative:

Open Original Shared Link

 

This site also includes a couple of other suggestions for constipation, as well as apple cider vinegar:

Open Original Shared Link

 

This site claims many other health benefits in addition to preventing constipation as well as diarrhea (some of these may be side-effects of curing the constipation):

Open Original Shared Link

 

Finally, this site states that it is the pectin that makes it work so well:

Open Original Shared Link

[LeanneMarie]

Thank you everyone! Just wanted to come back and say thank you to everyone who replied

[NatureChick]

I would avoid any products that have guar gum or xanthum gum as an ingredient (or any gum for that matter). The are added to gluten-free products to improve texture and to add fiber, but the latter is the problem.

Because these gums are super concentrated fibers, once they get into your digestive system, they can screw things up by absorbing too much liquid, which is counterintuitive because that is normally one of the reasons that fiber helps food pass through your system, but in this case goes too far. So the gums actually dry things out and cause constipation. (That is a super simplistic explanation.)

There are things you can do to lessen the problems. Rather than just have pancakes for breakfast, from a mix that contains a gum, have fewer pancakes and some fruit as well. 

But for now, I think I might avoid all of the gums, especially in baking mixes that you prepare at home because they seem to contain more than if you were buying a processed food. 

 

[HavaneseMom]

I see dairy has been mentioned a few times. Nothing gives me "C" like cheese! I love cheese and even a small amount will back things up and bloat me. I just gave it up again a couple of days ago. If you don't want to give up all of your dairy, maybe try cheese first. It takes me about a 1 1/2 to 2 weeks after I quit eating cheese for things to start working properly and regularly. I love cheese so much that I keep going back to eating it, then end up miserable from C and irregularity, which then leads to nausea, etc. and have to start the cheese detox process all over again. Good luck!