Getting sicker after diagnosis

[Jessie.Cait]

I would love some help!

After 20ish years of being misdiagnosed with IBS, I was diagnosed with celiac disease (positive blood test for tTG IgA and positive duodenal biopsy) ~ 6 weeks ago. Of course I've gone completely gluten free, and I've been crazy paranoid careful not to ingest any gluten. I've also completely avoided all oats (even certified gluten free) and cut out lactose (due to transient lactose intolerance... because I don't have villi) . But now I feel WAY WORSE. I've had abdominal pain every single day, which ranges from mild aching to severe 10/10 laying on the floor crying and vomiting pain. I understand that it takes a long time to get better, but why would I get so much worse? My best guess is SIBO, but I can't imagine that it could cause such extreme symptoms, can it? 

So my question to you fine folks is: did this happen to anyone else? Have you gotten sicker after you changed your diet? Is this normal? 

For arguments sake, lets assume that I did not ingest any gluten to cause these symptoms...

Thank you for your help!

[cstark]

Your body has been used to ingesting and has been coping with the gluten in its systems.  DON'T PANIC because your body is doing it for you.  

Seriously now, the medical field has a technological term defining when a system is used to working a certain way/routine.  When that is either disrupted or changed, it could take a while for the body adjust to a different way of doing things.  Another factor in the increase in symptoms could possibly be that your body is starting to "clean house".  It's trying to get rid of the amounts of gluten hiding out in all its nooks and crannies.  It is going to be a long term process.  It's like cleaning out a vacuum hose or other household item that is just caked with gunk.  The first cleaning gets rid of a large portion of the gunk and ick.  The subsequent cleanings gets rid of more and more ick but in lesser amounts.

I thought I was going to go crazy those first few months, but things are a lot better now. (I am about 10 months gluten free).  I still have moments of brain fog and even episodes, but my body is getting closer (and more used to)  to having a cleaner "household item".  I know it's tough at first with the increased onslaught of symptoms, but hang in there. 

 You may want to keep a journal of all that you ingest or come into contact with for a time to track anything that could exacerbate symptoms.  (For me, my episodes are chemically triggered as well.)  If for some reason a few months down the road, you still have large amounts of symptoms it would be a good idea to visit your GP again just in case there something else that is going on.

 

[squirmingitch]

Gluten withdrawal. It's real. I agree with what cstark said but I call it gluten withdrawal. Your body really does get "addicted" to gluten and when you go gluten-free, then the body has to cope with the withdrawal of a substance it was used to getting on a regular basis even though that substance was killing you. It isn't much different than drug addiction & the withdrawal process from that. 

It sucks, I know but I promise it will get better. Rest as much as you can, drink tons of water, eat well cooked foods to ease the strain on your villi. Bone broth - home made - is a great healer of the gut & very gentle on it as well as being extremely nourishing. Just google how to make it.

{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}

[maseymn]

I got extremely reactive to gluten after I went gluten free. I wouldn't discount that you might be getting glutened from a surprising source. The four things that got me when I thought I was completely gluten free: 1) I had to replace my pyrex dishes -- apparently the glass can get pits in it that traps gluten. I got an extreme reaction every time I used my old pyrex that had been originally used for gluten containing cooking. (The same is true of cast iron cookware). 2) I had to quit licking envelopes. Apparently envelope glue contains gluten. 3) Medications were and still are a source of consternation for me. I am constantly fighting with my pharmacy and insurance company. One weird thing -- I have to avoid yellow pills. There's apparently something in some yellow dyes that causes a gluten reaction in me (I also have to avoid yellow m&ms, yellow sweet tarts, and yellow skittles).  4) I had to give up lipstick and lip balms.  Oh, and I have to be careful what dishwashing liquid I use. (Dawn doesn't cause a reaction in me, so I stick to that).  I know I've gotten unintentionally glutened when I get extreme abdominal pain, and my hands and feet swell up slightly.  I'm not as reactive now that I've been off it almost 10 years.  The first probably 5 years or so, however, I would have an extreme reaction anytime I accidentally got glutened; and if I didn't figure it out right away (certain medications that I thought were gluten-free, and before I figured out the yellow dye thing) it would just build and build and get worse and worse.

Good luck with everything. The only other suggestion I have -- I've been using a probiotic that contains bifidobacterium infantis. The brand I've been using is CVS pharmacy, orangish box, "Digestive Probiotic", and I've had really good luck with that one. I've found that I feel a lot better when I take it, and have more energy. (They've done some studies on celiacs with that particular probiotic - the bifidobacterium infantis).  The other possibility -- maybe google what vitamin and mineral deficiencies can cause your symptoms; maybe have your doctor test you for deficiencies and recommend a protocol to get you back up to normal levels. I was very deficient in magnesium, vitamin d, and had problems due to iron and calcium deficiencies. (Anemia that would not go away was one of the things that actually made my doctor check for celiac disease). Remember, your body hasn't worked right for YEARS. There's probably a whole host of vitamins and minerals your body is now desperate for to start working properly. Healing takes a long time.

[maseymn]

In addition to my comment above, I should have said, too, that yes, I did go through some similar things early on. They would kind of come in waves. At the time, I knew a naturopath who called them a "healing crisis" -- your body getting overwhelmed as it was detoxifying and healing. She had said when your body quits fighting (in this case the gluten) then it turns all that energy into healing and purging all the stuff that your body stored when it didn't know what to do with it. She had told me at the time to treat it like I would if I were coming down with something -- drink lots of water, get lots of rest, support my body and let it do it's job. Again, good luck to you. As difficult as it is being gluten free, I am so GRATEFUL that they figured out what was wrong with me. I've never looked back, and I don't find it very hard to stay gluten-free, because the alternative is being SO sick. If this is a healing crisis, you might get a few more down the road as your body heals more and more, but it will pass and you will find there's a "jump" in feeling better after a bad spell like this. That was my experience, anyway.  If it doesn't pass after a few days, you are probably dealing with something else and need to do some more investigating.

[Spencer88]

I hope I'm adding this question to the right topic board. I was diagnosed with celiac on October 8th 2016. That day I switched my diet to gluten free everything. For a week or two after the diagnosis I felt alright. Anxiety was my worst symptom until recently. I haven't had a solid stool in about 8 to 10 days. I changed my cookware, sanitized my kitchen throughly, did just about everything I could prior to this cronic diahrrea. I did eat out once the day the symptom started. But it was at a place that claimed everything was gluten-free.

Since eating out, for the past 10 days my diet has been boiled chicken and white rice with a little bit of the broth from the chicken and Greek yogurt. Every now and then a small piece of an apple. I did this for about 5 days straight and noticed that I had some hard stools and then it became challenging to go to the bathroom. On day 6 I added a small amount of carrots and spinach to the boiled chicken thinking that might help me go. It did, the next morning my stool was diarrhea again. So now I'm back to white rice and boiled chicken with a little bit of the broth from that. I added Gluten free oats yesterday morning and this morning along with a small slice of an apple. 

My questions are one, is diarrhea just something you are going to experience when you are first diagnosed with celiac and changing your diet? 

Second, is there any way to reduce this? I've been drinking lots of water to stay hydrated and my muscle twitching and cramps have gone up due to all this I believe.

Finally, am I doing the right thing with this simple diet? I'd like to start some vitamin D3 and magnesium since I've heard that helps in the healing/recovery process. But I know magnesium may not be a good idea while having bouts of diarrhea. My first visit with my GI doctor is November the 9th. 

 

Thank you for the support! 

[squirmingitch]

I'm sorry you're feeling so bad. The first 6 months to a year can be a roller coaster, up & down, up & down. Secondly, do not ever trust eating out at "a place that claimed everything was gluten free" -- by that do you mean it was a totally gluten free restaurant or do you mean the restaurant claimed everything you ordered was gluten free? Cross contamination happens. You do not yet know how to "grill" the restaurant like you need to in order to trust eating out. That's probably where you went wrong. Remember, celiac is an autoimmune reaction & the moment you get any, it sets off a system wide "mounting of defenses". This does not resolve in 1 day. It can last weeks to months. 

Please read our Newbie 101 & follow the links contained within the threads. This will help you understand how to protect yourself and what's going on with you right now.

 

[GFinDC]

Hi Spencer,

Going gluten-free is really exciting fun eh? Not!

When I went gluten-free it took about 6 weeks for my gut to stop spasming.  I could look at my belly and see the skin moving.   So things don't heal on a dime.  It takes time for the body to stop attacking itself.  It seems like it wouldn't but the immune system is used to fighting deadly germs and not giving them a chance to get established.  So it doesn't give up easy.  Healing the gut depends on several things, time, a completely gluten-free diet, a healthy gut bacterial flora, and proper nutrition.

You aren't doing awful to reduce your foods to a minimum for awhile.  Some of the things that can cause problems for newbies are too much carbs, dairy, and cross contamination.  It's hard to have a healthy gut flora when your gut is constantly in turmoil.  The gut flora will generally improve after healing is progressed some, but at first it can be a problem.  Too many carbs can cause SIBO and lots of gas and pain.  Carbs are anything sweet, or starchy.

Dairy is also a frequent problem for people as the sugar in cow milk (called lactose) is digested by an enzyme made by the villi lining the gut.  The celiac disease immune attack damages those villi and goodbye lactase enzyme.  It is often possible to eat dairy without problems after some decent amount of healing has occurred.  Perhaps 6 months or so.  Some people never have that problem though.

Oats are not recommended for newbies as some of us (perhaps 10%) have an immune reaction to them same as wheat, rye and barley.  Plus oats are sometimes cross contaminated with gluten, although I see you had gluten-free oats.

Rice is actually a carb, and so might not be the best choice to start out.  Rice is also not good nutrition wise.  How about trying some green beans, or peas, or broccoli instead?  Sweet potatoes are good for nutrition although they have some carb content.  You could try some almond milk for a dairy substitute.  Sauerkraut might work for you if you are looking for probiotics from fermented foods.  I suggest avoiding soy during the early healing months.

Really it is kind of risky to eat out at all for the first 6 months IMHO.  It takes time to get the hang of eating gluten-free and knowing what is safe for your body.  It can be helpful to do all your own cooking and avoid processed foods for the most part.

I hope you feel better soon.  And welcome to the forum Spencer!

 

[Gemini]

On 10/4/2016 at 7:44 AM, maseymn said:

I got extremely reactive to gluten after I went gluten free. I wouldn't discount that you might be getting glutened from a surprising source. The four things that got me when I thought I was completely gluten free: 1) I had to replace my pyrex dishes -- apparently the glass can get pits in it that traps gluten. I got an extreme reaction every time I used my old pyrex that had been originally used for gluten containing cooking. (The same is true of cast iron cookware). 2) I had to quit licking envelopes. Apparently envelope glue contains gluten. 3) Medications were and still are a source of consternation for me. I am constantly fighting with my pharmacy and insurance company. One weird thing -- I have to avoid yellow pills. There's apparently something in some yellow dyes that causes a gluten reaction in me (I also have to avoid yellow m&ms, yellow sweet tarts, and yellow skittles).  4) I had to give up lipstick and lip balms.  Oh, and I have to be careful what dishwashing liquid I use. (Dawn doesn't cause a reaction in me, so I stick to that).  I know I've gotten unintentionally glutened when I get extreme abdominal pain, and my hands and feet swell up slightly.  I'm not as reactive now that I've been off it almost 10 years.  The first probably 5 years or so, however, I would have an extreme reaction anytime I accidentally got glutened; and if I didn't figure it out right away (certain medications that I thought were gluten-free, and before I figured out the yellow dye thing) it would just build and build and get worse and worse.

Good luck with everything. The only other suggestion I have -- I've been using a probiotic that contains bifidobacterium infantis. The brand I've been using is CVS pharmacy, orangish box, "Digestive Probiotic", and I've had really good luck with that one. I've found that I feel a lot better when I take it, and have more energy. (They've done some studies on celiacs with that particular probiotic - the bifidobacterium infantis).  The other possibility -- maybe google what vitamin and mineral deficiencies can cause your symptoms; maybe have your doctor test you for deficiencies and recommend a protocol to get you back up to normal levels. I was very deficient in magnesium, vitamin d, and had problems due to iron and calcium deficiencies. (Anemia that would not go away was one of the things that actually made my doctor check for celiac disease). Remember, your body hasn't worked right for YEARS. There's probably a whole host of vitamins and minerals your body is now desperate for to start working properly. Healing takes a long time.

Just to clarify a few things here for the newly diagnosed.......envelope glue does not contain gluten and it is safe for Celiac's to seal an envelope.  That is an old internet myth.

Not as many meds contain gluten as people think.  You still have to read labels or check with the manufacturer but many meds are completely safe.  I have yet to find one in 11 years gluten free but then again, I am not on a boatload of medications.

Dish washing liquid should never be a concern as I am assuming people rinse their dishes after washing them.  I am also assuming no one is drinking it.......... 

[Spencer88]

Thank you all so much for taking the time to respond to me! Really means a lot 

I guess I'm going about this right and wrong. I thought that eating carbs such as rice, something simple like that would help reduce the diarrhea or at least change it to a normal stool. 

I just noticed that when adding veggies like carrots and spinach my stool became loose again. So as for the recommendations to try a veggies and proteins diet for a while...I'm not against trying anything that would help but I don't know if that's wise to do at this point. 

I noticed others have mentioned almond milk. Ive been drinking Blue Diamond unsweetened almond milk for years. I love the stuff! The only dairy that I'm intaking right now is the Fage Greek yogurt with active cultures. I know that getting those probiotics from the active cultures helps towards the healing process. So far I haven't noticed any issues with consuming that.  

I guess if anyone one has any suggestions as to what I can make for food during this first part of my diagnosis and with my current symptoms (the diarrhea). Thinking of what I can eat is becoming more tricky. It almost sounds like I have to watch out for 99% of everything right now. 

Thanks again! 

[squirmingitch]

One thing to try, Spencer, is cooking all your veggies really well. I know they aren't very attractive that way nor so great tasting but the aim here is to make things easy on your gut while at the same time getting as much nutrition as you can through food. So mushy veggies are the order of the day, same applies to fruit - cook it. If you bought any gluten free processed foods either put them away for now or give them to a food bank. Gluten free processed foods are as full of junk as gluten processed foods. Just stick with whole foods for at least 6 months. Personally, I love sweet potatoes and they are very nutritious. I wash them, leave them wet, prick them once or twice, roll them up tight in tin foil & stick them in the convection oven @ 425 for an hour. When they cool enough to handle, you'll find if you cut the tips off each end then run your paring knife under the skin, you can easily roll the potato right out of the skin. I cook up a bunch, slice into thick rounds about 1.5", lay them on tin foil side by side & then fold it up, stick in a ziplock & put in the freezer. Then you have quick sweet potato slices whenever you need. I like to put a simdge of olive oil or coconut oil in a fry pan in the mornings especially & fry them. They're delicious!

You should be fine with the greek yogurt. You might try hard cheeses too. Because of the enzymatic process they go through in the aging process, they don't have the lactose like milk or soft cheeses. 

I know where you were coming from with the rice. Rice is binding so you figured it would firm up the stools. That's true normally but celiac isn't "normal" so rules don't necessarily apply. It may not be the rice getting to you at all. Like I said, it's going to be a rocky road that has smooth stretches for a while. This is why it's imperative not to eat out yet. That way you know it's not gluten getting you - at least not from eating out. 

Cook in large batches & freeze portions. Do you have a crock pot? That's a good way to make one dish meals with well cooked meat & veggies. Think in terms of soups & stews.

Nut butters can give you good nutrition too. Nothing like a nice spoonful of organic peanut, cashew, almond or sunflower butter to give you a quick pick me up. 

I did fine with carbs right from the start but some people don't so feel you way through that. 

Bone broth is highly nutritious, very easy on the gut & will help your gut to heal. Here are a couple links:

Open Original Shared Link

Open Original Shared Link

 

[Spencer88]

Thank you so much for taking the time to reply! I'll check these links out! 

[squirmingitch]

You're welcome!