red skin, pain, huge belly

[ironictruth]

So ok, I get the pain/bloating thing, but it still feels so crazy.

But my god, I look 6 months preggers after dinner and 4 months the rest of the time. How long will this last?! I have not gained any weight but have to hide me belly now. I can hardly breath! Omg, that does take me back to pregnancy. 

I had "acute marked focal duodenditis" a few weeks ago and an elevated DGP. the pain sometimes makes me seriously think I must be bleeding somewhere. It is actually worse then 3 weeks ago. Although many of the other glutening symptoms are finally vanishing. Even my mid and lower back is tender to touch. Sometimes it burns, aches or like someone is stabbing me in my side. My ribs hurt and everything is tender. 

I am on protonix and fish oil. I have a prn for xanax which helps the pain (off market use for muscle relaxant). 

 

I am fair skinned and notice a red under-the-skin discolored rash that comes and goes on my upper stomach. Sometimes it travels down one side. Not itchy. Almost like I can actually see the inflammation under my skin. 

1) when will I stop looking knocked up? 

2) Any other fair-skinned folks notice a purpleish-red rash on your bellies? It mostly goes away and comes back, which I tske to be a good sign. 

[cyclinglady]

Time.  You need time to heal.  Yeah, I am like a broken record!  ?

So...Lycra is your best friend for now (that and old baggy sweats!).  Hang in there!  Hugs!   

 

[ironictruth]

Sigh. I totally do love the packs of stretch pants at Costco though...

[GFinDC]

So why are you on protonix?

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Open Original Shared Link

Some conditions must be treated long-term with Protonix. Chronic use has caused stomach cancer in animal studies, but it is not known if this medication would have the same effects in humans. Talk with your doctor about your specific risk of developing stomach cancer.

Long-term treatment with Protonix may also make it harder for your body to absorb vitamin B-12, resulting in a deficiency of this vitamin. Talk with your doctor if you need long-term Protonix treatment and you have concerns about vitamin B-12 deficiency.

...

Taking a proton pump inhibitor such as pantoprazole may increase your risk of bone fracture in the hip, wrist, or spine. This effect has occurred mostly in people who have taken the medicine long term or at high doses, and in those who are age 50 and older. It is not clear whether Protonix is the actual cause of an increased risk of fracture.

...

Protonix side effects

Get emergency medical help if you have signs of an allergic reaction to Protonix: hives; difficulty breathing; swelling of your face, lips, tongue, or throat.

Call your doctor at once if you have:

• severe stomach pain, nausea, vomiting, and weight loss;

• diarrhea that is watery or bloody;

• seizure (convulsions);

• kidney problems - urinating more or less than usual, blood in your urine, swelling, rapid weight gain; or

• symptoms of low magnesium - dizziness, confusion; fast or uneven heart rate; tremors (shaking) or jerking muscle movements; feeling jittery;muscle cramps, muscle spasms in your hands and feet; cough or choking feeling.

Common Protonix side effects may include:

• headache;

• fever;

• cold symptoms such as stuffy nose, sneezing, sore throat;

• stomach pain, gas, nausea, vomiting;

• mild diarrhea; or

• joint pain.

This is not a complete list of side effects and others may occur. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

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Do you have esophageal erosion?  It seems like a rather dangerous drug to take for very long.  You shouldn't need it to deal with celiac disease symptoms IMHO.  It actually seems like a drug that could make your digestion symptoms worse.  Trying to reduce stomach acid is usually a bad idea IMHO.  Stomach acid is there for a purpose and that purpose is to protect us from germs and buglies that are ugly.  Many of the ugly buglies are killed by the stomach acid.  You are actually inviting bad germs to come in and setup shop in your body by lowering your stomach acid protection.

Perhaps your body is reacting to the protonix with some of the common side affects?  They don't sound like a whole lot of fun to me.  But to each his own they say.

[ironictruth]

I have duodenitis diagnosed late August. The protonix is supposed to be short term to help heal the gut. We should be tapering off in a month or so.

The pain and nausea led to the scope last month and the protonix. It did seem like it got worse instead of better though for a month. But, my DGP IGA also went from weak to strong positive after two weeks, so maybe that could explain it.

Trust me, not happy about being on it because I do not want to deal with acid rebound. But my inflamed intestines need a break. 

The pain just gets really bad. Tender, burning, upper GI (like pancreatic, but it is not) then stabbing pains by my right ribs. 

[GFinDC]

Ouch! Link has some information on duodenitis.

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I noticed the link recommends bismuth as one possible treatment.  That would be Pepto Bismol in the USA.  The wonderful pink liquid that keeps us sane.  I keep a bottle or 2 handy, along with milk of magnesia.

I wonder if the doctors did any tests to confirm the cause?  Are they considering the duodenitis not to be related to celiac disease?  The article linked suggests possible causes for duodenitis as infections, or problems with gall bladder or pancreas function, or Crohns.  I think they left celiac disease out of the list but I don't really think they should have.  Celiac can completely destroy the lining of the small intestine after all, so it sure seems like it could explain the duodenitis.

When going off the protonix perhaps it would be best to taper off the medicine.  Your doctor can tell you if it is ok to cut the pills in half or not.  That might reduce the rebound effects you mentioned.

Seems like it would be a good idea to take extra vitamin B-12 while you are on the protonix, since they say it can cause a deficiency.

Gassiness/bloating may be reduced by avoiding dairy and carbs and sugary foods.  That would probably reduce pain also.  Well cooked veggies are probably easier to digest.

[ironictruth]

6 hours ago, GFinDC said:

Ouch! Link has some information on duodenitis.

Open Original Shared Link

I noticed the link recommends bismuth as one possible treatment.  That would be Pepto Bismol in the USA.  The wonderful pink liquid that keeps us sane.  I keep a bottle or 2 handy, along with milk of magnesia.

I wonder if the doctors did any tests to confirm the cause?  Are they considering the duodenitis not to be related to celiac disease?  The article linked suggests possible causes for duodenitis as infections, or problems with gall bladder or pancreas function, or Crohns.  I think they left celiac disease out of the list but I don't really think they should have.  Celiac can completely destroy the lining of the small intestine after all, so it sure seems like it could explain the duodenitis.

When going off the protonix perhaps it would be best to taper off the medicine.  Your doctor can tell you if it is ok to cut the pills in half or not.  That might reduce the rebound effects you mentioned.

Seems like it would be a good idea to take extra vitamin B-12 while you are on the protonix, since they say it can cause a deficiency.

Gassiness/bloating may be reduced by avoiding dairy and carbs and sugary foods.  That would probably reduce pain also.  Well cooked veggies are probably easier to digest.

H. Pylori bacteria was negative. No Crohns, gallbladder remived in 1997. I thought of pancreas but they did a scan and bloodwork, all good. The new GI doc said there was no villi blunting (6 samples, no mention of bulb) but that the inflammation would be consistent with someone with celiac on a gluten-free diet. Since my antibody test came back positive, and I was on a gluten-free diet but not careful enough, we are fairly sure that is what caused it. The pathologist used the terms "marked"  and "focal" which the GI pointed out. They also want to test for SIBO.

He did not discuss how to get off protonix, and they have not returned 2 of my calls which is annoying. but i thought of halving it, then doing every other day. I will probably wait another few weeks though. 

My endocrinologist has me on d, b12, magnesium and zinc. He also has me off dairy. 

I just get queasy, upper pain and sometimes it feels like someone is knifing me in the right side. I am in pain more hours of the day then not. My heart skips beats and I get short of breath. 

I am just so tired of being sick and scared all the time. 

Not using a lot of carbs. Except quinoa which oddly seems to settle my stomach. I tried an apple last week and honestly thought my spleen might rupture. Peanut butter is not going well either. 

I took cycling lady's advice and made some bone both stew and that helps. 

[GFinDC]

Hi Ironictruth,

You sound like someone who is going to be highly motivated to avoid gluten!  My glutening symptoms used to last about 6 weeks.  So that really encourages a person to be careful.  But the gluten-free diet is a learning process, and we don't get to be experts at it in a day.  At least I sure didn't!

Something I used to do was eat only once a day.  That was a simpler way to keep track of foods I was eating, and I could reduce symptoms at night when I was sleeping. Or trying to sleep.  So I'd eat at noon and be done with it.  My symptoms would be hours old by the time I got ready for bed.

When I am glutened though, I always eat a lot.  I figure it helps to have a lot of food in the gut to kind of spread the gluten out more.  I used to always have a box of wine around too.  It helped when trying to sleep.

Aspirin was my preferred painkiller and still is.  Pepto Bismol has some aspirin it, and seemed to help with pain a little.

When you have an irritated gut, it helps to avoid anything that can lead to gas and bloating.  Gas and bloating cause pain in an irritated gut.  So simple whole foods are the way to go, and no processed foods or restaraunts.  Those things can be added back in later though, after your gut is healed up.

It used to be I had a hard time keeping food down.  I'd eat and then a few minutes later out it would come flying.  Flying without wings even!  Amazing!

Your diet really needs to be a gut healing diet now.  It's not about eating for pleasure, but eating for health.  That's a big shift in people's thinking sometimes.  The gluten-free diet is a medical diet.  So it's much more important than a weight loss diet.  I'm sure you understand that, but just in case any newbies are reading.

I hope you feel better soon.  Stock up on the Pepto and aspirin and boxes of vino.   Don't forget the milk of magnesia!

[ironictruth]

Thank you. I am eating very simple. No wine or aspirin though because it irritates it more. Plus my heart races like crazy with wine recently, which sucks cause I love it.  

 Few processed foods and all are certified. 

I could not do one time per day though. I have only lost about 5 pounds.  But I quit working out 10 weeks ago (ran 3-4 times per week) and have not gained an ounce. That has never happened to me before. Plus my endo says my sugar drops per some test. 

I do use pepto sometimes and melatonin to sleep. 

Just sick of nausea and feeling faint. And still scared there is something else going on. 

[frieze]

9 hours ago, ironictruth said:

H. Pylori bacteria was negative. No Crohns, gallbladder remived in 1997. I thought of pancreas but they did a scan and bloodwork, all good. The new GI doc said there was no villi blunting (6 samples, no mention of bulb) but that the inflammation would be consistent with someone with celiac on a gluten-free diet. Since my antibody test came back positive, and I was on a gluten-free diet but not careful enough, we are fairly sure that is what caused it. The pathologist used the terms "marked"  and "focal" which the GI pointed out. They also want to test for SIBO.

He did not discuss how to get off protonix, and they have not returned 2 of my calls which is annoying. but i thought of halving it, then doing every other day. I will probably wait another few weeks though. 

My endocrinologist has me on d, b12, magnesium and zinc. He also has me off dairy. 

I just get queasy, upper pain and sometimes it feels like someone is knifing me in the right side. I am in pain more hours of the day then not. My heart skips beats and I get short of breath. 

I am just so tired of being sick and scared all the time. 

Not using a lot of carbs. Except quinoa which oddly seems to settle my stomach. I tried an apple last week and honestly thought my spleen might rupture. Peanut butter is not going well either. 

I took cycling lady's advice and made some bone both stew and that helps. 

No! Protonix is enteric coated, no cutting allowed!  comes in 20 and 40 mg doses and a liquid.  and yes it should be tapered.  i would be curious why the buffering system in you duodenum is not working?  that would be pancrease yes?

[ironictruth]

Ah, well then no cutting! I have called the doc 3 times. No response.

What do you mean by pancreas? They did my blood enzymes and they were normal. Pancreatic stool test was normal. CT scan was normal.