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Gluten Free 5 Weeks Some Symptoms Getting Worse


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32 replies to this topic

#16 motheroftwins2010

 
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Posted 14 February 2014 - 05:25 AM

I should say I've been feeling good yesterday and this morning but waking up feeling good Is a new and much welcomed gluten free side effect!


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#17 notme!

 
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Posted 14 February 2014 - 11:34 AM

I should say I've been feeling good yesterday and this morning but waking up feeling good Is a new and much welcomed gluten free side effect!

awesome!  :)  in the beginning, there were good days and bad days, but as things started to heal up, there were more good days than bad days.  i was surprised when the headache i didn't even know i had suddenly disappeared.  yes, the waking up in the morning, lolz, instead of dragging around for hours!!  glad you are feeling better. 

 

i remember i kept a food journal in the beginning, for the 'bad' days.  encouraging to go back and see i had more 'good' days if i could just make it through the 'bad' one, a 'good' one was right around the corner..........  :)


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arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

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#18 MGR

 
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Posted 15 February 2014 - 05:25 AM

You said you had blood in your stool? Please don't forget to mention this to your GI when you meet him next!! I have ulcerative colitis as well as celiac and this is one of the first signs of a flare up- you really have to watch what you eat to minimise your D , because if it develops further the D will get so bad that you will not be able to hold anything in!! I also love having yoghourt fro breakfast, but I have had to stop doing this because i have discovered since going gluten free that this also gives me D-

Also are you stressed? My UC tends to flare up in there situations too.

According to some studies there is a high incidence of ulcerative colitis sufferers who are also celiac.

Good luck and love, my thoughts are with you
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#19 greed2109

 
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Posted 24 February 2014 - 05:17 PM

I have very similar issues.. constant burring abd pain and my stomach would feel like it was swelling up at certain points and if i touched it.. it would feel like I was stabbing my stomach with a 1000 degree rod. I too was very strict with my diet and just had a repeat colonoscopy/endoscopy and it was pretty much normal. The Celiac Disease was non-evident ensuing it had healed from 6 months of the diet, but I still have this abd pain. I will be seeing the GI tomorrow to discuss further. I wish you luck. If you wanna look at my first edg report I posted it here earlier today and compare it to yours…http://www.celiac.co...abdominal-pain/


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#20 dilettantesteph

 
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Posted 25 February 2014 - 05:48 AM

I felt good for 4 days when I first went gluten free, and then suffered a long while worse than ever.  It didn't hang on though.  I got smarter at avoiding contamination.  I found other foods that caused me problems.  I kept healing.  My hardest days were often followed by my best new highs.  When the going gets tough, keep trudging.  You might not have arrived yet, but you are going in the right direction.

 

D

 

This was also the case for me.  I have problems with some processed gluten-free foods.  I had to keep a food/symptom journal and keep careful track of what I ate to determine which foods were safe for me.  Many of us need to avoid soy.  That could be your problem.  You could try to eliminate the yogurt for a week and then add it again to see what happens.  I'm glad that you are now showing some improvements.  I hope that continues.


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#21 motheroftwins2010

 
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Posted 25 February 2014 - 03:03 PM

I have very similar issues.. constant burring abd pain and my stomach would feel like it was swelling up at certain points and if i touched it.. it would feel like I was stabbing my stomach with a 1000 degree rod. I too was very strict with my diet and just had a repeat colonoscopy/endoscopy and it was pretty much normal. The Celiac Disease was non-evident ensuing it had healed from 6 months of the diet, but I still have this abd pain. I will be seeing the GI tomorrow to discuss further. I wish you luck. If you wanna look at my first edg report I posted it here earlier today and compare it to yours…http://www.celiac.co...abdominal-pain/

I did not have as many biopsies as you I had four. They all read the same Moderate vilious blunting and increase intraepithelial lympocytes. What the physician did note on visual inspection is that I have erosions but due to the wording I couldn't tell if it was in the stomach, duodenum or the small intestine itself. I also tested negative for H Pylori.

 

Soy does not bother me I don't eat processed food and don't add soy to my food and when I do eat the random recipe with soy it makes no difference. Dairy is a big problem for me I don't eat it at all. My yogurt doesn't seem to be the problem either I've been 4ish days with no Cultured Coconut Milk (i.e. my yogurt) it has no soy in it either but not eating it does not seem to change anything either but I'm waiting longer because I did get glutened by mishandled ground beef at meijer. It either was really badly cross contaminated or illegally added filler and it was a bad one I lost the ability to walk for an evening and was effected for way more than 48 hours which was how long the other two glutenings lasted AWESOME! So I'm kind of restarting watching my reactions prior to the meijer incident I had not been glutened in like 3-3.5 weeks. My doctor knows about the blood he is looking for UC Microscopic colitis, chron's etc on my colonoscopy which is now moved to next week. It's not salmonella so that's nice. My horrible smelling gas is back but my guess is that it's from the beef glutening. I'm not going to be surprised if they find colitis or chron's at this point to be honest. It is what it is and I'll deal with it if that's the case. I will get through this and feel better soon!


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#22 motheroftwins2010

 
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Posted 11 March 2014 - 07:51 AM

I'm now at 9 weeks post diagnosis and on the gluten-free diet I am certain the gluten is all gone from our house and I don't eat processed foods or eat out but I'm now up to diarrhea 5-6 times a day (no matter what I eat or if I even eat), no weight gain still losing very small amounts of weight, bad fatigue, and stomach aches and pains all the time. My colonoscopy came back normal (7 biopsies and a polyp all removed and tested) and my GI is now ordering a CT scan to screen for lymphoma another thyroid check and if those come back  going through the process to re-scope and determine if it's refractory sprue... This seems like a nightmare. I also made an appointment with my general MD and am asking her to check for addison's, diabetes, pancreas issues, anything else that causes weight loss and diarrhea. I truly feel like I'm living a nightmare. I guess there is nothing I'm asking here I just am so frustrated and sick of this that I figured if anyone understood it would be the people here.


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#23 GottaSki

 
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Posted 11 March 2014 - 10:19 AM

I'm now at 9 weeks post diagnosis and on the gluten-free diet I am certain the gluten is all gone from our house and I don't eat processed foods or eat out but I'm now up to diarrhea 5-6 times a day (no matter what I eat or if I even eat), no weight gain still losing very small amounts of weight, bad fatigue, and stomach aches and pains all the time. My colonoscopy came back normal (7 biopsies and a polyp all removed and tested) and my GI is now ordering a CT scan to screen for lymphoma another thyroid check and if those come back  going through the process to re-scope and determine if it's refractory sprue... This seems like a nightmare. I also made an appointment with my general MD and am asking her to check for addison's, diabetes, pancreas issues, anything else that causes weight loss and diarrhea. I truly feel like I'm living a nightmare. I guess there is nothing I'm asking here I just am so frustrated and sick of this that I figured if anyone understood it would be the people here.

 

Sorry you are still feeling poorly -- it takes many of us much more than two months to heal.  It is possible to feel even worse and have symptoms change and then one day realize you are improving.  Some times that happens within days, sometimes months and unfortunately for some of us - years.

 

I do hope you improve quickly and it is important for you to investigate any other possible causes of your symptoms -- just a note in case your doctor has already suggested this path -- it is way too early to have a repeat endoscopy with Refractory Celiac Disease in mind.

 

I didn't read your entire thread...my apologies if you have already heard/done this -- it is best for the healing digestive system if you eat primarily whole foods -- limiting all processed foods, even those that are labeled gluten-free should be used sparingly as treats rather than staples.

 

Hope you find some answers and are feeling much better very soon :)


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#24 jiggles

 
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Posted 11 March 2014 - 10:46 AM

Hello motheroftwins ,
I am so sorry to see your still having a rough time of it , it did take me over a year to stop losing weight ,
my gastroenterologist and dietician were baffled ,
It was so frustrating ,
and it's only recently that I managed to put a tiny bit on

Can the dietician find you any suitable drink supplements to help you at this time ?
they managed to find me some without milk in which helped a lot ,

I didn't feel well for a very long time after going gluten free , there were a lot of down days ,
the only thing that helped me feel better was a very strict whole foods diet ,

my meals were mainly sweet potatos steamed fish or meat and veggies , fruit hurt too much with trapped gas ect ,

my dietician told me to take a multi vitamin , but I didn't take anything, as I was too scared , even a pice of raw apple hurt so much ,
someone suggested I stewed them which did help a little

but so many foods seemed to hurt my damaged gut ,

eggs milk dairy coconut soya and corn were out too
as they gave me the big D ,
Also rice or any manufactured cakes and bread made me feel sick and dizzy at first ,

I also found that I got awful nausea and dry heaving when I travelled in the car ,
I actually thought the car sickness was gluten contamination , " as it only ever happened after going gluten free! " so weird ,

but .... I finally worked out that in those early days the car sickness was magnified to such an extent it was quite debilitating ,

I also had problems with ground meat ,
so I bought one of those hand held meat grinders to grind my own meats ,

and at last over a year later I have only just put on two pounds, of which one pound comes and goes ,
It has all been a very slow process , but I am glad to say that I have now gained back a few foods,
my latest was eggs, so I am hoping to gain back a few more in time

and I am glad to say that the car sickness has stopped being magnified , although I do take travel pills for long journeys now ,

I guess what I am saying is nine weeks is still very early , and healing may depend on how damaged our guts are to begin with ,
and didn't you say that your four biopsies all had damage ?

Perhaps you could write down for us in detail what you eat and what supplements you take ?
as you never know others with more experience may spot something lurking in there for you ,

I know it takes quite a long time for us to heal fully
and it only takes a small unforeseen hiccup to put me back for a week or two,

More recently would you believe it .... I think it was a large boiling ham ,
I may be wrong .. but I can only think it was the stabilizers in it that made me sick,
as I am okay with bacon and other hams without stabilizers ,


Also there are some things I cannot tolerate after going gluten free that I had no issues with before ,
it's crazy ,
for instance someone on here was sick due to contaminated building dust from the walls , crazy crazy disease,

I do hope you get to the bottom of all this and start to get better real soon ,

big hugs x x jiggles
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#25 motheroftwins2010

 
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Posted 11 March 2014 - 10:59 AM

Thank you I know it takes a long time to heal but I'm actually getting worse when I was diagnosed I did not have daily diarrhea nor did I have stomach aches and pains  now I'm up to 5-6 times a day and regular stomach pains. In addition to losing 7lbs in the first 10 days of going gluten free and not gaining it back. So rather than just feeling bad I'm worsening and it feels like it's happening quickly. I don't take supplements I was told to take them but I'm too scared they will have gluten and right now I can't add to my issues. I stopped eating coconut yogurt and it hasn't made a difference and I stopped the kombucha per doctor's request resulting in nothing. Every single food causes problems. There has not been one "safe" food that I can find. I just got engaged about 3 weeks ago and my ring fit that night now it's too big so even my fingers are losing weight. I was much better off pre-gluten-free diet but there is no way to go back now even a peck on the lips from someone drinking a beer 30 min earlier results in a glutening and I can't take the pain that that causes on top of worsening symptoms.


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#26 GottaSki

 
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Posted 11 March 2014 - 11:10 AM

Yes, sadly some of us do get worse before we improve.  If you have not, remove dairy -- it is the most common intolerance for those with Celiac Disease.

 

Hang in there!


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#27 jiggles

 
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Posted 11 March 2014 - 11:19 AM

Hi again ,
when I couldn't get up from the sofa , I drank the broth from the chicken , please ask someone to boil up a chicken for you so you can at least drink the broth ,
also your dietician can they prescribe food drinks for you whilst you cannot eat , I had some prescribed and they did help ,

plenty of water and the chicken broth will help until your doctors find out what the problem is for you

x x jiggles
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#28 gilligan

 
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Posted 13 March 2014 - 06:59 PM

Wow!  We have a lot in common!  I recently posted a thread similar to yours asking for help.  I'm now six months out from diagnosis and I feel worse all the time!  And, like you, I continue to lose weight.  I haven't seen any blood, and I'm not in the bathroom quite as many times as you are, but other than that we are quite similar.  It seems like every week I discover something else that I can't seem to tolerate.  I've had two endoscopes a year apart.  The first showed "slight inflammation - non specific, and I was told that I didn't have celiac.  The more recent one "moderate inflammation", and this time I was told I tested positive. I can't find a protein drink either, so the dietician told me to try pea protein powder. I haven't tried it yet.  I've been drinking MuscleEgg for awhile.  You can order it online.  It's simply pasteurized egg whites that comes frozen.  I seem to tolerate it well.  I have an appointment with a new gi in a few weeks.  I'm hoping he can help figure out if there's an additional problem.  I hope you see some improvement soon.  Keep writing!  I'm so anxious (for both of us) to hear what you find out.


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#29 1desperateladysaved

 
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Posted 15 March 2014 - 07:18 AM

My nutrient levels fell somewhat after I went gluten free.  They have since gone up again.  Keep on it you should get somewhere!

 

D


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#30 motheroftwins2010

 
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Posted 20 March 2014 - 11:06 AM

Just an update for anyone who was wondering. My colonoscopy was completely normal so I was sent for a CT Scan to rule out lymphoma. I do not have lymphoma, however, during the CT scan they found inflammation near the end of my small intestine (not anywhere outside of the small intestine though) indicating Crohn's disease and recommended a colonoscpy to confirm. My GI, however, thinks the CT scan is a false positive because my colonoscopy was negative and has prescribed hysocyamine to stop the diarrhea. I am having a second opinion given by a separate hospital that has a highly regarded celiac program since I have many symptoms of crohn's including eye issues. I also dropped below the minimum sodium levels so I was tested for addison's disease too waiting on the results. My b12 also tanked and I am dumping more than half of my shot in 3 days or less so I was moved to every two weeks again. I think we are finally getting somewhere it's just slow going...


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