Help!

[Jms13]

Diagnosed for years, recent unknown exposure put me in the hospital. This time around, instead of bathroom issues, I’m just extremely bloated and retaining lots of water (8lbs in 3 days, don’t eat nearly enough for it to be real weight) How long until this goes away and is there anything I can do to help heal so this awful bloat goes away?  Help!

[cyclinglady]

I am so sorry that you are ill!   Unfortunately, I do not have any solutions for you other than to stay hydrated and rest.   Let’s hope other members can offer good advice.  

[Hellodee2]

I am having the same problem right now. I can't eat and when I do my abdomen bloats and I don't know why. It doesn't matter what I eat or drink. I also burp, or try to, a lot.

[icelandgirl]

Hi jms,

I am so glad that you posted this as I am having a similar issue and am hoping you get some answers.

Mine started on December 10th, according to my food/symptom diary.   I have bloating in my upper abdomen...stomach area I'm thinking.  I also feel like I need to burp all the time and do.  I sound like I have been downing beers all day.  It's frustrating and I don't know how to make it stop.

Googling has led to it possibly being gastritis, along with some scarier things, but I am pretty sure if I go to the Dr he will think gastritis and want to start a PPI, which I don't want.

I hope you get some answers that can help all of us!

 

[cyclinglady]

What did the hospital’s diagnosis?  Did they assume it was just a celiac flare up?  Did they test your antibodies?  Any new processed foods ingredients that you might have reacted to?  If it does not resolve soon, make an appointment with your GI.  I do not recall other members reporting retaining water like that, but with celiac disease nothing surprises me.  

I have had my “glutening” symptoms change dramatically (including long recoveries) and for piece of mind, I did get my celiac antibodies checked to actually confirm the glutening (usually am due for an annual follow-up anyway).  My antibodies were elevated the few times I went in over the last five years.   And just so you do not think that I am the “Boy Who Cried Wolf”, I see my doctor because I have passed out (“the captain will turn the flight back — your call”), paramedics insisted, 1000 hives daily for almost six months, broke some bones, severe symptoms (vomiting, ab pain), lasting for over a month and I have YET to identify the gluten source.  So, it was not due to eating a big gluteny donut on purpose.     I am sure my issues are not just celiac disease but a cocktail of things unique to me, so newbies do not worry!  ?

 

[icelandgirl]

17 minutes ago, cyclinglady said:

I have had my “glutening” symptoms change dramatically (including long recoveries) and for piece of mind, I did get my celiac antibodies checked to actually confirm the glutening (usually am due for an annual follow-up anyway).  My antibodies were elevated the few times I went in over the last five years.   And just so you do not think that I am the “Boy Who Cried Wolf”, I see my doctor because I have passed out (“the captain will turn the flight back — your call”), paramedics insisted, 1000 hives daily for almost six months, broke some bones, severe symptoms (vomiting, ab pain), lasting for over a month and I have YET to identify the gluten source.  So, it was not due to eating a big gluteny donut on purpose.     I am sure my issues are not just celiac disease but a cocktail of things unique to me, so newbies do not worry!  ?

 

I appreciate this a lot cyclinglady.  I've been asked if I was glutened and I really don't think so.  Usually my gluten exposures have resulted in massive D, body aches, headaches for 3 weeks or so.  This is literally just upper abdominal bloating and burping.  Uncomfortable, but that's it for a little over a month.

I do wonder though...in December I ate out twice.  Both times at a gluten free restaurant, though.  But I usually only eat out about twice a year.  I switched to a new gluten free flour because I wanted to try one.  Should be fine right?  Maybe I am not as careful about handwashing all the time as I was?  My youngest started school this year and she has gluten there every day.  I have also gone out for coffee several times recently, which should be fine?  But who knows anymore.

It does give me pause to think that maybe it is a very slight gluten exposure and not something terrible...so thank you for that!

[cristiana]

Interesting...  I've just seen an incredible hospital nutritionalist about my recently elevated numbers.  I thought I had gastritis with burping and upper bloating and burning over the summer.  But it was gluten all along as my TTG went up to the 80s, and yet I thought I was being sooo good.  Just goes to show.  She reckoned a few glutenings in the autumn as I ate out in places that clearly didn't know what they were doing, plus some meds I was taking that contained gluten (my mistake) could be responsible.

So, to get over all this  my coeliac clock in terms of diet has had to be reset, in the sense that:

• I've been told my lactose intollerance is probably back, because of damaged villi, so stay off dairy for a while;
• no oats for one year (but I've never been able to eat pure oats since DX so I don't wish to try them again in a hurry anyway)
• and I've been told to avoid eating out for three months. 

Then I'm going to have another TTG test.  Will report back.

[cristiana]

1 hour ago, icelandgirl said:

It does give me pause to think that maybe it is a very slight gluten exposure and not something terrible...so thank you for that!

Might be worth a TTG test, Icey?

[icelandgirl]

19 minutes ago, cristiana said:

Might be worth a TTG test, Icey?

I think you could be right.  I am going to ask my gastro Doc.  Just sent him a message about it.  Thanks for the suggestion!

[icelandgirl]

6 hours ago, cristiana said:

Might be worth a TTG test, Icey?

Thank you again for suggesting this!  I heard back from my Dr and he has ordered labs.  He said we'd start there and then decide next steps based on those results.  I am going to do a walk in to the lab tomorrow.

[plumbago]

On 1/10/2018 at 7:58 PM, Jms13 said:

Diagnosed for years, recent unknown exposure put me in the hospital. This time around, instead of bathroom issues, I’m just extremely bloated and retaining lots of water (8lbs in 3 days, don’t eat nearly enough for it to be real weight) How long until this goes away and is there anything I can do to help heal so this awful bloat goes away?  Help!

I'm so sorry to hear this. Are you still in the hospital? What did your doctors say about the bloating? It's probably not this, but have they ruled out ascites? I would need a little more background before I try to answer. Let us know.

Plumbago

[Jms13]

I thought I was totally gluten-free. Wasn’t having any of my “normal” celiac symptoms. Just the bloating, so I went into my docs to find out what it was. The bloating was so bad by the end of the night I looked 9 mos pregnant. The doctor reviewed my blood work and sent me straight to the hospital for a pint of blood and 3 iron infusions. They did a cat scan which didn’t show anything. After three days, I went home. My antibodies were highly elevated so my GI did another endoscopy. He said I’m getting exposure somewhere, intestine not in good shape. I’ve replaced appliances since that’s the only thing I can think of that could’ve been the issue. I am extremely cautious with all I put in my mouth now.  I am still getting iron IVS, but the bloating is worse than ever and now I’m gaining weight. None of my doctors seem to care about the bloating, they are more concerned with the severe anemia. I’m trying to find a nutritionist in my area but haven’t really found one that specializes in celiac. I’m not a large person, typically weigh around 125-130 and I’m 5’6 but since I got out of the hospital I’ve gained almost 9 lbs and I’m eating approx 1400 calories a day. My stomach is almost flat in the morning and looks 9 mos pregnant by nighttime so it’s definitely not normal . I know some weight gain can be normal but I’ve been diagnosed with this disease for 16 yrs and always maintained my weight. So I don’t understand what is happening right now. I’ve had zero symptoms of exposure aside from this bloating. 

[kareng]

12 minutes ago, Jms13 said:

I thought I was totally gluten-free. Wasn’t having any of my “normal” celiac symptoms. Just the bloating, so I went into my docs to find out what it was. The bloating was so bad by the end of the night I looked 9 mos pregnant. The doctor reviewed my blood work and sent me straight to the hospital for a pint of blood and 3 iron infusions. They did a cat scan which didn’t show anything. After three days, I went home. My antibodies were highly elevated so my GI did another endoscopy. He said I’m getting exposure somewhere, intestine not in good shape. I’ve replaced appliances since that’s the only thing I can think of that could’ve been the issue. I am extremely cautious with all I put in my mouth now.  I am still getting iron IVS, but the bloating is worse than ever and now I’m gaining weight. None of my doctors seem to care about the bloating, they are more concerned with the severe anemia. I’m trying to find a nutritionist in my area but haven’t really found one that specializes in celiac. I’m not a large person, typically weigh around 125-130 and I’m 5’6 but since I got out of the hospital I’ve gained almost 9 lbs and I’m eating approx 1400 calories a day. My stomach is almost flat in the morning and looks 9 mos pregnant by nighttime so it’s definitely not normal . I know some weight gain can be normal but I’ve been diagnosed with this disease for 16 yrs and always maintained my weight. So I don’t understand what is happening right now. I’ve had zero symptoms of exposure aside from this bloating. 

Look up the Fasano diet

[plumbago]

Regarding what you say is severe anemia, if there are reduced red blood cells then often the heart increases output to compensate. But only in really really severe anemia. Is it possible the doctors think if the anemia is corrected then the bloating will be too? You've left the hospital - does that mean the iron deficiency is corrected?

So they think you have iron deficiency anemia (though we don't know your levels). How is your B12 level? Lack of adequate B12 can cause bloating. So can hypothyroidism.

I recommend a hands-on physical assessment. Seems like such a daring thing to ask for these days. Also, having a tummy is sometimes an adjustment those of us in middle age have to make. I don't mean to suggest that is what it is (we don't know your age), or to make light of anything, but that that may be a possibility. There are many other things that can cause bloating, and a 9 pound gain is something that should not be trivialized.

Plumbago

[Jms13]

4 hours ago, plumbago said:

Regarding what you say is severe anemia, if there are reduced red blood cells then often the heart increases output to compensate. But only in really really severe anemia. Is it possible the doctors think if the anemia is corrected then the bloating will be too? You've left the hospital - does that mean the iron deficiency is corrected?

So they think you have iron deficiency anemia (though we don't know your levels). How is your B12 level? Lack of adequate B12 can cause bloating. So can hypothyroidism.

I recommend a hands-on physical assessment. Seems like such a daring thing to ask for these days. Also, having a tummy is sometimes an adjustment those of us in middle age have to make. I don't mean to suggest that is what it is (we don't know your age), or to make light of anything, but that that may be a possibility. There are many other things that can cause bloating, and a 9 pound gain is something that should not be trivialized.

Plumbago

My hemoglobin was 6 at time of blood transfusion, iron saturation was 4% and ferritin was 3, iron 18.  I am still receiving iron infusions via outpatient, hemoglobin is on the rise since receiving the blood but hemotolgist said the cells are still small. I did go back to my primary care doctor. He is not much help as far as celiac knowledge goes and refered  me back to my GI. I have an appt in 2 weeks with him but did put a call in yesterday about the rapid weight gain and am waiting his reply. I am 44, and I also realize that a tummy and a different metabolism is part of aging. However 9 lbs in that short of a time, just doesn’t seem right all things considered. 

[plumbago]

12 hours ago, Jms13 said:

e is not much help as far as celiac knowledge goes and refered  me back to my GI.

 

My only suggestion on hearing this is to take a picture of your abdomen in the morning when it is flat, and then another one later in the day when you look 9 months pregnant, put the two images in one file (like a before and after) to show to the hematologist and ask him or her if that is normal. If his/her office provides web portal services, send it electronically. Good luck and keep us posted.

Plumbago

[Jms13]

Thank you, that’s a good suggestion. I have appointments with all 3 of my doctors in the next two weeks.

[Jms13]

15 hours ago, kareng said:

Look up the Fasano diet

Thank you, I am researching that now. I’m wondering if I am a non responsive celiac. Something to definitely discuss with my GI doctor.

[cyclinglady]

14 hours ago, Jms13 said:

My hemoglobin was 6 at time of blood transfusion, iron saturation was 4% and ferritin was 17. I am still receiving iron infusions via outpatient, hemoglobin is on the rise since receiving the blood but hemotolgist said the cells are still small. I did go back to my primary care doctor. He is not much help as far as celiac knowledge goes and refered  me back to my GI. I have an appt in 2 weeks with him but did put a call in yesterday about the rapid weight gain and am waiting his reply. I am 44, and I also realize that a tummy and a different metabolism is part of aging. However 9 lbs in that short of a time, just doesn’t seem right all things considered. 

Have other anemias been ruled out (you can have more than one type)?   Small red blood cells can also be attributed to Thalassemia.  I say that because my iron-deficiency anemia was often overlooked because I have Thalassemia (that and menstruation).  

Also, Karen’s suggestion of the Fasano diet is a good one.   You might be exposed to a hidden gluten or perhaps become even more sensitive to even 20ppm.  

Maybe an endoscopy is in order.  You might have an ulcer or chronic gastritis (another reason as to why your glutening symptoms have changed.)

[plumbago]

2 hours ago, cyclinglady said:

Maybe an endoscopy is in order.

They did - look upthread and one of the OP's comments.

[cyclinglady]

7 minutes ago, plumbago said:

They did - look upthread and one of the OP's comments.

Dang.....another hasty reply by me!  I guess I was thinking about myself.  I need to post an update on my progress which could help a few people.  Great catch and thank you.  ?

So, Karen’s advice to go on the Fasano diet temporarily might be the best solution for active celiac disease.  

[icelandgirl]

52 minutes ago, cyclinglady said:

Dang.....another hasty reply by me!  I guess I was thinking about myself.  I need to post an update on my progress which could help a few people.  Great catch and thank you.  ?

So, Karen’s advice to go on the Fasano diet temporarily might be the best solution for active celiac disease.  

I hope you do, I would love to know what you learned.