Good & bad days - is this normal recovery??

[AnxietyQueen]

Hi all, happy new year!

 

This is my first post and I hope someone can help. I was diagnosed on 12th December but because of length of time to actually get biopsy results, I've been gluten free for coming up to 9 weeks now. Also dairy free, and grain free on the advice of my GI during the recovery period.

 

I'd actually convinced myself that I wasn't celiac because my symptoms weren't improving an awful lot whilst waiting for results. Everyone keeps telling me it'll take time but I'm not convinced there isn't something else going on with me.

 

My initial symptoms were chronic diarrhea, nausea and hair loss. The D was really awful in August and I lost a massive amount of weight because I stopped eating really. This of course made everything worse, and in total ive lost upwards of 60lbs. Basically the D 'settled' to being 'not quite D'. Don't want to be too graphic, but I need to go within minutes of waking up, loose, floating, just really unpleasant. True malabsorption poop I suppose. It's also unpredictable throughout the day. Sometimes fine, often not. When I have to go, I normally have VERY little warning. That coupled with other issues has made me anxious to leave the house a lot. Ive lost so much confidence with this.

 

The thing is, the hair loss has slowed right down, I'm now eating more and have managed to gain a couple of lbs so that'll be helping with that, but my digestive issues are still there. I seem to be having a few good days here and there. Dare I say it, 'normal' poop! But only ever for a day or 2. Then I'll go right back to where I was... Urgency, cramping, and frequent. Is this normal during recovery? Did anyone else experience anything similar?

I really don't understand why I can be eating the same foods, and one week im having 'normal' poops, then the following week im back to it all just going straight through me.

I'm concerned there's another digestive issue going on, but I know that until a few more months have passed it'll always just be passed off as Celiac and be told to give it time.

 

Anyone have any advice? I can cope with the diet, the lifestyle change, etc. what I can't cope with is my bowels being so unpredictable! I just start feeling ok and then it all goes wrong again.

 

Please please someone tell me this will get better?? Everything I read seems to suggest digestive issues clear up first! ?

 

AQ

[Jenifer]

Welcome to the group.  I have been gluten free now for four months- so am stil quite the newbie.  I can say that when I started the gluten-free diet it took time to see consistent improvements, some days were good, and other days were back to the horrible pain.  Your insides are healing right now and it will take some time.  One thing that really helped me was adding a probiotic to my diet.  

That said, if you still continue to not see any improvements, you might want to look into eosinophilia disease.

 

Good luck and I hope you feel better soon!

[krosmon]

I've been gluten free for about 3 months.  I am also sensitive to soy and xanthan gum, so I have additional issues I have to watch out for.   There isn't much out there in the stores or in a restaurant that doesn't have either gluten or these two ingredients.  I even went to PF Chang's with a group of gluten free people, but because of the soy, all they could offer me was a dish of steamed broccoli.   

Some days are better than others.  Yesterday, I felt great - lots of energy and ambition to get in and do stuff.  Today, even though I didn't eat anything with gluten, my gut has been giving me fits.  I also have A-fib and sometimes it seems to kick the heart rate up.  I've been to the hospital several times, and it ended up never being my heart but a "digestive problem".   They gave me a prescription strength Pepcid and it helped.  But the pain always comes back.  I told both my internist and my endocrinologist about the celiac and they ignored me.  My holistic doctor is the one who told me what it was, and as I had already checked it on line, I knew he was right.   So, I just have to keep making sure I don't eat anything that will trigger the pains.  I see where this could go on for a long time to come.  Yikes.  But I'll deal with it.

[AnxietyQueen]

Thanks Jenifer, that's kind of what everyone here is saying to me... I'm healing and take each good day as a one up. Problem is I can't tell a good day until it's done if that makes sense? I guess I just have to ride this thing and hope the good days start outweighing the bad.

I think I need to look into a probiotic. I have just started takin omega 3 on top of my regular multi it in the hope that might help with the healing 

[AnxietyQueen]

23 minutes ago, krosmon said:

I've been gluten free for about 3 months.  I am also sensitive to soy and xanthan gum, so I have additional issues I have to watch out for.   There isn't much out there in the stores or in a restaurant that doesn't have either gluten or these two ingredients.  I even went to PF Chang's with a group of gluten free people, but because of the soy, all they could offer me was a dish of steamed broccoli.   

Some days are better than others.  Yesterday, I felt great - lots of energy and ambition to get in and do stuff.  Today, even though I didn't eat anything with gluten, my gut has been giving me fits.  I also have A-fib and sometimes it seems to kick the heart rate up.  I've been to the hospital several times, and it ended up never being my heart but a "digestive problem".   They gave me a prescription strength Pepcid and it helped.  But the pain always comes back.  I told both my internist and my endocrinologist about the celiac and they ignored me.  My holistic doctor is the one who told me what it was, and as I had already checked it on line, I knew he was right.   So, I just have to keep making sure I don't eat anything that will trigger the pains.  I see where this could go on for a long time to come.  Yikes.  But I'll deal with it.

It's so tough to begin with isn't it, identifying everything. I've about got it Sussed when I cook from home, not yet had the balls to eat out yet (I know that sounds silly and a fear I'll have to face soon!)

i guess we do just have to keep plodding on and it really will take time. 

[Jenifer]

7 minutes ago, AnxietyQueen said:

Thanks Jenifer, that's kind of what everyone here is saying to me... I'm healing and take each good day as a one up. Problem is I can't tell a good day until it's done if that makes sense? I guess I just have to ride this thing and hope the good days start outweighing the bad.

I think I need to look into a probiotic. I have just started takin omega 3 on top of my regular multi it in the hope that might help with the healing 

It's hard, the ups and downs, you have to stay focused on the goal- to have more good days then bad, I used to journal every day, so that I could look back on the days I was really sick and see that I was indeed having more good days.  I also started doing a morning medication daily to try and center myself and deal with the stress and grief of this disorder.  It gets better.

Even as I write this I am having a bad day today.  Have not idea how I got "glutened". But I did, and am spending the day in Jammie's in my bed.  But I know that this is temporary and tomorrow will be better.

 

Hang in there!

[Darren]

It's normal to have ups and downs for first few months, mine took a couple. Also just make sure you aren't getting cross contaminated somehow as that could be causing issues if you aren't completely gluten-free. Hang in there you'll be fine!

[squirmingitch]

Be sure to read the Newbie 101:

Follow the links contained in the thread. This will help you to keep from getting cross contaminated as well as explain quite a few things.

Many celiacs have problems with soy especially at first. I did but don't have any problem with it now however I don't eat that many things that do contain soy.

The first 6 months can be a real roller coaster ride -- even the first year. It is wise not to go out to eat for a while --- 6 months or so. You really need to get the diet down pat before you try to play Russian roulette dining out. 

I wouldn't say that the gut symptoms are the first to resolve. We are all individuals & our symptoms & reactions are just as individual as we are. In four years of being on here I have seen people who have everything else improve before the gut symptoms do and then again some do find quick relief from the gut issues and there are those who have resolution of symptoms that fall in the "everything in between" category. I have the celiac rash (dh) and had mild infrequent gut symptoms yet that was one of the last things to resolve for me. 

While our guts are healing we can get strange reactions to even gluten-free food. Often people find they have to cook fruits & veggies very well so they are easier on our system. That is something you might try. And a food & symptom log is almost mandatory.

[AnxietyQueen]

11 hours ago, Darren said:

It's normal to have ups and downs for first few months, mine took a couple. Also just make sure you aren't getting cross contaminated somehow as that could be causing issues if you aren't completely gluten-free. Hang in there you'll be fine!

Thanks Darren, just when I have a bad period I think it's not working! I know I need to be patient, I just thought I'd have more results by now.

I will double check for cc but our house is largely gluten free now after I'm pretty sure I got glutened by a stray pastry crumb a month or so ago! That was fun!

[AnxietyQueen]

11 hours ago, squirmingitch said:

Be sure to read the Newbie 101:

Follow the links contained in the thread. This will help you to keep from getting cross contaminated as well as explain quite a few things.

Many celiacs have problems with soy especially at first. I did but don't have any problem with it now however I don't eat that many things that do contain soy.

The first 6 months can be a real roller coaster ride -- even the first year. It is wise not to go out to eat for a while --- 6 months or so. You really need to get the diet down pat before you try to play Russian roulette dining out. 

I wouldn't say that the gut symptoms are the first to resolve. We are all individuals & our symptoms & reactions are just as individual as we are. In four years of being on here I have seen people who have everything else improve before the gut symptoms do and then again some do find quick relief from the gut issues and there are those who have resolution of symptoms that fall in the "everything in between" category. I have the celiac rash (dh) and had mild infrequent gut symptoms yet that was one of the last things to resolve for me. 

While our guts are healing we can get strange reactions to even gluten-free food. Often people find they have to cook fruits & veggies very well so they are easier on our system. That is something you might try. And a food & symptom log is almost mandatory.

Thanks, this is reassuring. I have to remember that there is no set pattern for recovery from anything really, and when something such as celiac disease affects individuals in so many different ways it's impossible to foresee how that recovery will go. Infuriating though!

ive been keeping a food/symptom diary since August. Started out not being as detailed as I am now, so looking back can be a bit difficult because I didn't log all symptoms so get a bit panicky that things aren't improving enough. I know though, just from the way I feel overall that there have been massive improvements - I guess my gut symptoms have always been the main issue, particularly when I got really sick. The fact that they are still holding me back makes me a bit despondent sometimes

[squirmingitch]

5 hours ago, AnxietyQueen said:

I guess my gut symptoms have always been the main issue, particularly when I got really sick. The fact that they are still holding me back makes me a bit despondent sometimes

I know. (((((((HUGS))))))) Just hang in there. I'll parrot something I have read on here often enough.....

"We didn't get sick overnight and we won't heal overnight -- it takes time." 

I think it helps some to remember that whenever you get discouraged. I know it helped me. We are understandably in a rush to feel great and can get so caught up in that mindset that we fail to slow down for a moment & realize the truth of that quote. Just breathe and give your body some time. 

[Beverage]

Hello, AnxietyQueen.  Do not despair.  It takes awhile to heal, and it's an ongoing process of finding possible gluten contamination. 

I was diagnosed in June 2015, felt horrible for at least 2 months after stopping gluten, like I had the flu or a little constant hangover, then after that cleared up, still very very tired.  Doc discovered I also had B1/thiamin deficiency (vitamin deficiencies common in celiac's until the gut heals), and I am now on a short course of super high B1 supplements and feeling better.  Also, via  a blood test, he discovered Candida Albicans, which is a yeast/fungal overgrowth, which can set in in the intestines because of the havoc and stress of the celiac's.  To treat that I am on a protocol of low low sugar (sugar feeds the nasty bugger) various natural supplements over a long course of time to eliminate that.  As soon as I started on the first thing, the Oregano Oil, I saw a huge improvement in the "poop" situation.  This doc would usually prescribe an anti-fungal drug for the Candida, but my body does not tolerate a lot of drugs, overreacts with high blood pressure, etc., so having to go the longer more gentle route to eliminate the Candida.

I have just gone through an additional round of clearing out things in the house that might cross contaminate me...cutting boards, plastic food storage containers (old gluten can get in any scratches and contaminate you, tossed all and got pyrex ones), crock pots (any of those fine crazing lines or cracks can hold onto old gluten), waffle maker, toaster, cleaned the oven.  Also, hand and lotion (just found Andalou brand certified gluten free), lip balm, lip stick, etc.  Also consider if you are drinking tea and using tea bags...some brands use glue which contains gluten on the bags!!!  I switched to a brand (The Republic of Tea) that is certified gluten free.

I went for years with complaints from very severe allergies, could not smell anything, and overall declining health to my regular doc, but all I ended up with was high blood pressure, on diuretics that resulted in kidney damage, and the Celiac's was never diagnosed.  After getting laid off, I finally had time to try another doc, and am so grateful to find a fantastic naturopath doc who diagnosed the celiac's in one visit and one blood test.  I've been working with him on these other things since June and am finally seeing improvements overall.  I actually have a little more energy now, overall inflammation is going down down down, so things are looking up.  And the kidneys bounced back to just in the ok range, which the regular doc said would never happen (pish).

If you do not have a doc that is very knowledgeable in Celiac's, I'd try to find another.  A lot has changed in only a few years and not all docs are up to date.  And it's not all about just the Celiac's and going gluten free and voila, you're fantastic.  Because of the damage it has done, a lot of other things can set in, but you need someone who will work with you on that as your gut heals, and so that you heal and feel better as fast as possible.

Good luck!

 

 

[squirmingitch]

1 hour ago, Beverage said:

  Also consider if you are drinking tea and using tea bags...some brands use glue which contains gluten on the bags!!! 

 

This is an ongoing internet myth about wheat glue being used in tea bags. Please see:

Open Original Shared Link    In particular see the write up on Lipton.

 

Open Original Shared Link The entire article is full of information but here is an excerpt about gluten in tea bags.

I quote from them, "

Sometimes you can tell how credible a statement by the evidence that is presented to support it.

One of my favorite Internet myths is the rumor is that some tea bags are sealed with a wheat paste. If that was the case, the tea from those bags would not be acceptable for someone who needs to eat gluten free. There are lots of Internet blog posts and email messages and web sites that repeat the myth, but the next sentence is virtually always something like “I called company A and company B and company C and they told me they don’t use wheat paste to seal their tea bags”. I have yet to find someone who has found a company that actually does this. “But it might be true” is usually the final sentence.

Hmmm. Doesn’t sound there is a lot of credibility to this myth.

I took it further and looked for information on how tea bags are actually sealed. I found some industry pages and some companies that make machines that seal tea bags and some tea companies that were trying to debunk the myth about sealing teabags with wheat paste. What did I learn? Tea bags are generally sealed in one of three ways: heat sealed with a bit of plastic, crimped where the top and bottom of the bags are pressed really hard together, or folded and stapled. When I pushed really hard at one person who was making a tea bag claim, they sent me a notice that a “food grade” glue had been approved by the World Health Organization for use in manufacturing tea bags. No information about the ingredients, nothing that even hinted at wheat. From this, they justified spreading the information that this was something people should worry about.

Does this mean that all tea is gluten-safe? No. Some herbal or flavored teas contain barley malt, but black, green, oolong, and white tea are all naturally gluten free and grow in areas where gluten grains do not grow.

If you have time and a detective bent, do your research. When you read a new “fact”, make sure you check the credibility of the information and the source before you pass it on or change your behavior."

 

[Beverage]

Thanks for that info.  However, the gal in the dispensary at my naturopath warned me about this and pointed to the warning on the box of the tea I had been buying to ease sore throats.  I threw out all I had at home.  I don't remember the brand, but I will check next time I am there.  Thanks again.

[squirmingitch]

Yes, please do let us know what brand that was.

[manitourose]

Hi anxietyqueen,

I hope the weekend and last few days have been better. I was diagnosed in mid-Dec and went gluten free Dec. 16th following my biopsy. Up until the day after Christmas I felt horrendous. Then I had several wonderful days and then after New Years I began feeling bloated at night (never had it previously), back to abdominal pains, insomnia, muscle aches, irritability..... ugh. I am frustrated that I could feel better then feel horrible again. I have been extremely careful too and have done extensive reading and research since even the mention of having a celiac panel in early Dec. I can't wait till it settles too into more good days. :-/