Too Extreme Or Just The Right Medicine?

[roxweb]

So I was diagnosed almost a month ago. For the most part, as far as I can tell, I've removed gluten from my diet, checked medications, changed shampoo and conditioner, and limit my processed foods, gluten-free and all.

 

The problem is, I still have bloating, gas, constipation, and now even have new symptoms I didn't have before, like excessive swelling of a leg that has always been slightly swollen, and weird "fuzzy" headaches that just never go away.

 

I'm thinking somewhere I'm either 1) still getting gluten, or 2) something else new is reacting funny.

 

I'm considering something rather drastic as a way to get to the bottom of this (I've heard WAY too many horror stories of people going YEARS not figuring out what is causing their symptoms; I want to avoid that). 

 

My idea is to completely eliminate EVERYTHING, except a choice 1/2 dozen items. Say, chicken breast, raw veggies and fruits, cream of rice, or some other similar combo. I would even stop taking all the vitamins and other pills I'm consuming (all vitamins and 1 probiotic and a water pill). 

 

After a week, maybe I will be able to find a "normal", knowing that, as best as possible in this world anyway, I have eliminated anything that could/should cause symptoms. Once that is done, I can then start adding pills one at a time, say 1 new one every couple of days, and see how I feel. Provided all the pills go well, then foods, again one new thing at a time, until I have a really good idea of what works WELL. Then, seems like I'd have a good baseline for what things are not going to work.

 

So I'm wondering, is this going a bit too far? It would be quite a drastic step, and would require a LOT of willpower for sure, but I'm so tired of the up and down, and I've experienced enough "up" days, and seen how AMAZING things CAN be (so sad how many years I lived not knowing) that I don't want to waste any more time than I have to being sick, or wondering "NOW what is causing this?"

 

All thoughts appreciated!

[MJ-S]

Google Fasano diet. This diet is targeted towards super sensitives, but is also a great unprocessed diet to use in the beginning while you're in healing mode. It allows for plain rice (not processed cream of rice), all fresh fruits, vegetables, eggs and meats (no processed/canned items), olive oil, salt, beans, and nuts still in the shell. Some fruit juices/dairy items are ok as well. The  idea is to avoid processed foods as much as possible. If you're willing to try it, it's a great diet to help you heal, after which you can slowly start to add things back in, ideally one at a time at least 4 days apart from each other. 

 

Be very cautious with the pills. You should be able to search this site and others to find certified gluten free brands. Country Life is one. I would stay away from anything non gluten-free certified. 

[notme]

what you are describing is an elimination diet - which is what is recommended at times when you (and all of us! lolz) can't figure out what we are eating that is making us miserable  it's not extreme at all - make sure you keep a food journal (i don't know about you, but i can't remember everything i ate without writing it down)   personally, i am leery of vitamin pills, and i have my vitamin levels checked every 6 months and they have all come back good without taking any supplements (except D - an i get that from my doc prescribed) it seems my body is absorbing nutrients again, so, no need for extra vitamins.  many celiacs take b12 and find that is helpful.  if you take a probiotic and still have indigestion (the big D - diarrhea) , maybe try to take one at night and one in the morning?  and also, digestive enzymes are very helpful to help break down foods and maximize your body's digestive process.  good luck!  

[LauraTX]

The above ladies are right on the money here.  I definitely wouldn't include anything processed in your elimination diet.  You should be able to make a decent cream of rice type porridge thing with cooked rice.  Lastly, if your water pill is a prescription medication and you are also having leg swelling, I would go see your regular doctor to make sure your heart is okay, and not discontinue that medication unless under their guidance.

[cyclinglady]

That food journal? Keep in mind that your transit time may be off for days. I had a BM everyday, but my transit time was three days long. What you eat today may not be processed for days and your reaction might be delayed as a result. Honestly, supplements (excluding probiotic or enzymes) can be be hard to digest for the first few months.

[roxweb]

Ah yes this is all great! Now it makes sense why this seemed like a rational solution! It seemed so radical when I started thinking about it, so I'm glad it is something that just makes the best health sense. I'm going to try this and see how it goes! At least I'll know. Though, I do think I'll have to ask my Doctor about eliminating the water pill.

 

While my Doctor was great about having me tested when I first brought up the possibility, I'm starting to realize she doesn't really know much about celiac disease beyond possible symptoms and testing. She even recommended that my daughter not have her vitamin levels tested, even though she was diagnosed with no other known physical symptoms. Seems vitamin levels would be the first obvious thing to check up on after a diagnosis!

 

And I already keep a food journal, so I'm one step in the right direction!

[bartfull]

You're on the right track. All I would change is the raw veggies. They are easier to digest of they are cooked. And yeah, instead of cream of rice, just go with plain rice. You could even mix fruit with it for breakfast.

[MJ-S]

You can try contacting the manufacturer of the water pill and see what they tell you. Many will give a standard disclaimer, but they may also confirm if the pill is gluten free.

[roxweb]

Yup actually the pharmacy did call and was told the water pill was gluten free. Another pill, for headaches, was not and was switched but I haven't used that one since (its for migraines and I haven't at least had one of those since this whole thing started).

 

I'm starting to wonder about whether everyone really even knows, even in the case of these manufactures. At least, whomever is answering the phone. I was once told from the HyVee 800# representative that a HyVee product (a probiotic) was gluten free, only to find out later that it wasn't on the official HyVee Gluten Free products list. Does it have to say "certified" in order for us to really know? You'd think the manufacturers could be more careful about these things.

[Fenrir]

I think it is good to keep a journal so you can pin point possible problems. However, I will also point out that it is not uncommon to continue to have symptoms or even new symptoms early on in recovery. I was having worse/new symptoms two months after going gluten-free. Even after going through the diet with a comb to find anything with gluten in it I came up empty. However, without any change in diet (other than removing gluten of course) the symptoms resolved over the next couple of months. Not sure if it was gluten withdrawl or simple that it takes a while for the immune response to stop.

[LauraTX]

....Does it have to say "certified" in order for us to really know? You'd think the manufacturers could be more careful about these things.

On Medicines it is not going to be a common thing.  Vitamins and supplements do need more scrutiny than RX medications.  With RX medications the "There are no gluten ingredients but we cannot guarantee the absence of gluten" CYA statement means it is acceptably gluten free.

[SMRI]

Yup actually the pharmacy did call and was told the water pill was gluten free. Another pill, for headaches, was not and was switched but I haven't used that one since (its for migraines and I haven't at least had one of those since this whole thing started).

 

I'm starting to wonder about whether everyone really even knows, even in the case of these manufactures. At least, whomever is answering the phone. I was once told from the HyVee 800# representative that a HyVee product (a probiotic) was gluten free, only to find out later that it wasn't on the official HyVee Gluten Free products list. Does it have to say "certified" in order for us to really know? You'd think the manufacturers could be more careful about these things.

 

Since you shop at HyVee, each store (the bigger ones anyway) have a Dietitian on staff and they will walk you around the store and show you what is safe, what is not, etc.  I would suggest making an appointment with them and see.  They Hy-Vee's by us have a really nice gluten-free section.

 

I had to stop taking my vitamins.  They were giving me horrible stomach cramps.  They were gluten-free but something in them was really bothering me.

 

Your Cream of Rice--is that something you make on your own or are you buying cream of rice soup?  If it is something you are buying, most "cream of"s" have gluten in them.  Gluten is tricky in some products so I would go over everything you are eating and really make sure it is gluten-free.  I use the shopwell app on my phone.  You can set it to check for gluten.  It will flag some things that may not have gluten in them but it says it does and then you need to double check online but for the most part, it does a really good job of finding gluten in products.  Goofy things like Soy Sauce, licorice, etc. have gluten--sometimes things you would never expect---I've found frozen chicken breasts in broth that has malt in the broth so those would not be gluten-free.  It's frustrating!!

[1desperateladysaved]

I think you have some good ideas and you should keep walking (like this) with your mind engaged. I understand the philosophy of cutting many foods right away and hoping to get them back later.  I always liked that better than having to cut more and more.  I would expect your body to be working hard at recovery for a while.  I had leg swelling, one leg (right) bigger than the other for a long time.  My doctors said that my lymph system was going crazy.  Mine seems to have been linked to foods that bothered me, but as I understand the lymph system helps to clean out the body for whatever reason.  Squats was an exercise that I thought helped with the swelling when I could do them.  You could start with one or whatever is comfortable.  It is incredible to watch as the swelling finally recedes.  Best wishes as you heal and go on with your life.

 

Dee

[julissa]

this thread really hit home. I am now almost 2 years gluten dairy and soy free. over the past 2 years I have noticed reacting to foods that were originally ok. like lately I have had to give up chocolate, dark drinks like cola and tea, corn, and nut butters that were great for snacks. I think it's always a work in progress and we need to listen to our bodies. your approach seems right on to me, but be aware things can change down the road. 

[roxweb]

All these comments have been very useful, thanks to everyone who shared their thoughts. I've checked out the elimination diet (very similar to the paleo diet which I was also considering) and am going to start with that. I am hoping I can add some foods back in at some later date, though at this point it seems hardly worth the chance of feeling sick all the time (I'm sure I'll feel different in 3 months!). The Paleo diet actually has some very great looking options, and worse case, I could live with it. 

 

While it is very comforting to hear that my issues are all "normal"; I have been guilty of believing that once I removed the gluten, voila, I was cured! To known now that this will be a much longer challenge is difficult to swallow but I'm not the first and certainly won't be the last to have to manage it. 

 

THANKS again everyone!

[Fenrir]

All these comments have been very useful, thanks to everyone who shared their thoughts. I've checked out the elimination diet (very similar to the paleo diet which I was also considering) and am going to start with that. I am hoping I can add some foods back in at some later date, though at this point it seems hardly worth the chance of feeling sick all the time (I'm sure I'll feel different in 3 months!). The Paleo diet actually has some very great looking options, and worse case, I could live with it. 

 

While it is very comforting to hear that my issues are all "normal"; I have been guilty of believing that once I removed the gluten, voila, I was cured! To known now that this will be a much longer challenge is difficult to swallow but I'm not the first and certainly won't be the last to have to manage it. 

 

THANKS again everyone!

Yeah, it's a common misconception with newly diagnosed folks. Unfortunately it can take a couple of years to fully recover and if you are like me the symptoms actually got worse for a couple of months while on a gluten-free diet.

 

We just have to remember that the disease is a result of an immune response and they don't go away immediately when the antigen (the substance causing the response) is removed from the diet. The immune system tends to take it's sweet old time making this change and  you can be experiencing damage for weeks or even months after you stop eating gluten.

 

This is not to say that maybe you don't have something else going on but it probably needs 2-6 months before you start thinking maybe it's not celiac. Also, there are small number of Celiacs that continue to have issues even while on a gluten free diet. They do have medications that can help if you are the rare case of a celiac that doesn't improve with a gluten free diet.

 

However, for now it seems you probably just need to give it time and keep a good food journal.

[notme]

cream of rice:

 

Open Original Shared Link

 

don't hate!  

 

for us former farina (aka cream of wheat) lovers, this is a safe substitute.  no cream, no wheat....  i eat it all the time

[Fenrir]

cream of rice:

 

Open Original Shared Link

 

don't hate!  

 

for us former farina (aka cream of wheat) lovers, this is a safe substitute.  no cream, no wheat....  i eat it all the time

I have texture issues when it comes to food and that stuff is on my "yucky" list.

[notme]

I have texture issues when it comes to food and that stuff is on my "yucky" list.

lolz !    yeah, one box of the stuff lasts for ever.... 

[roxweb]

Well a trip to the Doc revealed bursitis in my knee (lucky me). She feels, as also everyone here is sort of saying, that this should go away with time. I sure hope so because the alternative sounded rather painful!