New Problem

[GottaSki]

Procedural Report, no Biopsy report yet.

 

Grade 2 Esophagitis in the lower third of the esophagus and the gastroesophageal junction compatible with erosive esophagitis and reflux esophagitis

Erythema, Congestion, coffee ground heme and petechiae in the Stomach and fundus body compatible with  Gastritis

Erythema, congestion and atrophic appearance in the antrum and pre-pyloric region

Erythema in the distal bulb and proximal second part of the duodenum, compatible with mild duodenitis

Otherwise normal to the third part of the duodenum

Gastric PH 1 ( I do not understand that but do not understand any of this really so, there it is)

 

I have made several posts in the past 7 weeks, that is how long I have been sick.  I was glutened 8 weeks ago.  I have been very careful about what goes in my mouth since.  Is this new gluten or not healed yet from years of gluten?  Or something new altogether?  Waiting to hear from the doctor. 

 

How long have you been gluten-free?  It can take months or years for the damage of celiac disease to repair itself -- my endos got worse at years one and two and finally there was minor improvement at year 3.  Have you identified any other food issues since removing gluten?  Some of us have to remove more than gluten before healing can happen -- once healed many of these foods are edible once again - except gluten of course.

 

Hang in there

[anti-soprano]

Procedural Report, no Biopsy report yet.

 

Grade 2 Esophagitis in the lower third of the esophagus and the gastroesophageal junction compatible with erosive esophagitis and reflux esophagitis

Erythema, Congestion, coffee ground heme and petechiae in the Stomach and fundus body compatible with  Gastritis

Erythema, congestion and atrophic appearance in the antrum and pre-pyloric region

Erythema in the distal bulb and proximal second part of the duodenum, compatible with mild duodenitis

Otherwise normal to the third part of the duodenum

Gastric PH 1 ( I do not understand that but do not understand any of this really so, there it is)

 

I have made several posts in the past 7 weeks, that is how long I have been sick.  I was glutened 8 weeks ago.  I have been very careful about what goes in my mouth since.  Is this new gluten or not healed yet from years of gluten?  Or something new altogether?  Waiting to hear from the doctor. 

I have no idea what celiac can do to the stomach, but I can tell you about my experience.  My first endo showed nothing but gastritis,  I was having the test because I thought I had terrible acid reflux that wasn't responding to meds (Ha!).  Since it showed nothing, the doctor did, well....nothing.  8 months later (different doc) I had another one with no reflux meds specifically to implant a bravo to test for reflux (which again showed nothing).  I don't know if there was gastritis- she didn't mention it.  But she did, on a whim, do a biopsy of my duodnum and here I am (thankfully).  

 

It sounds as if you have a LOT going on- no wonder you feel horrible.  I hope the doc has some solutions for you when you meet.

All the best!

Shellie

[surviormom]

Its been about a year since I first gave up gluten, I was lumped as a Non-Celiac Gluten Sensitivity.  I came here for answers and the more I learned the more I thought, um, this is me.  So, I have tried to remain gluten free with the exception of a week in August, 2 birthdays and an anniversary, for which I had red dots all over me for 5 weeks and a 3 day flu that I do not know now if it was really flu or not.  All clear after that until 4/3 middle sons birthday, he said come on mom just one piece, I thought ok, a small one, I expected to be itchy and have an upset tummy for a few days ( I was constipated at the time so..)  there were a couple of learning incidents. a. Nail Polish b. trying to meet a friend at Panera Bread, no I had no intention of eating there, just meeting her there and having a coke, but I could not breath in there.  c. Sauces in restaurants.

 

So, still healing?  The doc office called I go in tomorrow to talk.

[GFinDC]

Hi Surviormom,

 

It sounds like you are learning the ropes of living with celiac disease. One thing that is different about the gluten-free diet and other diets is that it is a medical diet.  Not just a weight loss or weight gain (for body building) plan.  The big difference is those kind of diets allow occasional "cheating" with no real consequences.  But celiac disease is an autoimmune disease and the immune system doesn't take breaks.  So anytime you get gluten in your GI system the immune system is going to attack.  I think you understand that now, after your birthday cake experiment?  Not criticizing at all, I think most us did some kind experimenting on our reactions at some point.  It's all a learning process.  One study showed that some celiac patients still showed intestinal abnormalities after 18 months on the gluten-free diet.  So, healing is not an overnight process and each instance of glutening can have effects for a long time.  That's why it is important to avoid all gluten in the diet, even if it makes life a bit less convenient for a while.  Your family and friends don't have to suffer with the symptoms and gut damage that you do, so they may not (and probably won't) understand how important it is for you to avoid all gluten.  You will need to be responsible for your own health, be your own best advocate as they say, and protect your self first.  There is nobody else who can do a better job of deciding what you should risk food wise than you.  Sometimes it is better to just not eat, and wait until later.  More often it is better to plan ahead and make sure to bring safe food for you to eat.  Or just not take a chance.  Just the opposite of what they say on the Outer Limits opening, you have the control, you control the horizontal and the vertical.

 

 

I wanted to someday find a way to slip that sci-fi reference into a post.  Thanks for the opportunity!

[surviormom]

Thanks.  I understand.  I think my kids may need the gluten-free as well that is why the whole house is gluten-free now, each has improvements in some part of their life or health.  

 

I needed to hear it.  My husband understands it more now too.  He was not very supportive before, he tried to be, but did not really get it, he gets it now.  He is a sci-fi man, he would appreciate that.

[surviormom]

Here we go.

 

Peptic Duodenitis

Chronic inactive gastritis in Stomach in andrus, body, and fundus

Acute esophagitis with focal ulceration/fibrinopurulent exudate material

Hiatal Hernia

 

No specific features of celiac sprue identified.

 

I was told to remain Gluten Free, Lactose Free and to begin anti reflux diet as well.  I am to take Gaviscon and Prilosec, raise my bed (how)

 

So, does any of this sound right, for a year gluten free.  

 

Called me a Non-Celiac Gluten Sensitivity.

[nvsmom]

It's unusual for a doctor to come out and diagnose NCGS. I'm glad you have a diagnosis of that anyways - knowing you have to commit to the gluten-free diet makes it easier to do (in my opinion).

 

What is the doctor doing for your other issues beyond the prilosec?

[surviormom]

He did not use the Letters spelled out like that, he called it Non-Celiac Gluten Sensitivity.  Told me that I am sensitive to a point that I could become Celiac, but do not test as Celiac.  So, that is what went into the computer on me.  

 

New to this, so I do not know if its the norm or not.  

 

Prilosec, Gaviscon, already taking Florastor and TruFlora, and the diet, plan of no gluten, no dairy, and an acid reflux diet that I have not looked over yet to see what else I am giving up.

[pianoland]

If you've been gluten free for a year, would it even be possible to correctly determine celiac from that?

Also do you mind sharing what the "acid reflux diet" is?

[GottaSki]

This is my opinion -- has basis -- but too tired to share all the science right now....

 

GERD / acid reflux meds do not help and often hurt.

 

You see...those of us with damage to our digestive system are actually making too little acid -- not too much...so when we take these meds we make even less which throws the chemistry off for the whole digestive tract -- read up on taking HCL rather than preventing acid -- or PM me to remind me to tell you more later.

 

Happy Friday!

[eers03]

I react to oats.  Not on the level you described but I do react.

[shadowicewolf]

I don't raise my bed rather i use this Open Original Shared Link

 

The wedge pillow works just as well. Acid travels upwards when ya lay flat. This prevents that.

 

It takes some getting used to, but worth it.

[surviormom]

If you've been gluten free for a year, would it even be possible to correctly determine celiac from that?

Also do you mind sharing what the "acid reflux diet" is?

I will share it afterwhile, it is not very different, mostly high protein, veggies, no process, etc.  what most of us are already doing.  I need to read through it again to share it properly.

[surviormom]

If you've been gluten free for a year, would it even be possible to correctly determine celiac from that?

Also do you mind sharing what the "acid reflux diet" is?

No alcohol, coffee, caffeine, refined sugar, chocolate, that part really hurts.  

[surviormom]

I don't raise my bed rather i use this Open Original Shared Link

 

The wedge pillow works just as well. Acid travels upwards when ya lay flat. This prevents that.

 

It takes some getting used to, but worth it.

Thanks, just looked, I will get one.  It looks easier than elevating the head of my bed, safer too.  Blocks under the bed seemed like an accident ready to happen in my opinion.  Why would a doctor recommend such a thing?

[GFinDC]

You could try some carob powder instead of chocolate.  Kind of similar.

 

Have you tried DGL?  DGL kills off h.pylori which can cause stomach pain.  It's not unusual for people to have h.pylori.

[shadowicewolf]

No alcohol, coffee, caffeine, refined sugar, chocolate, that part really hurts.  

there is a bit more to it then that. No spicy, no greasy and no rich foods in addition to what you mentioned. GERD is no fun

 

Thanks, just looked, I will get one.  It looks easier than elevating the head of my bed, safer too.  Blocks under the bed seemed like an accident ready to happen in my opinion.  Why would a doctor recommend such a thing?

 

There are beds you can get that can raise or lower the head (or even the foot) of the bed. Perhaps the doctor was meaning that?

[surviormom]

You could try some carob powder instead of chocolate.  Kind of similar.

 

Have you tried DGL?  DGL kills off h.pylori which can cause stomach pain.  It's not unusual for people to have h.pylori.

I was negative on the H Pylori, but he saw reason to test me for it.  And yes there is more to the diet, I was just trying to give a fast answer yesterday, I have kids and am still trying to absorb it all.  No spicy, no sweet, no alcohol or caffeine.  I am getting the wedge.  The doctor wanted me to put blocks under the bed and my husband was concerned about doing that with kids around, the "what if".  I will list the diet better tomorrow, reading it over one more time, tomorrow the house will be calmer.

[surviormom]

No alcohol, coffee, caffeine, refined sugar, chocolate, that part really hurts.  

ok, quiet house, kids are playing, husband is at work, laundry is started.

 

Frequent small meals.

Avoid eating/drinking within 2-3 hours of going to bed (that one is hard for me, I like to go to bed early and I like tea before bed)

Avoid lying down or straining/bending after eating, 

Avoid tight fitting clothing

Avoid high fat meals and decrease fat

Avoid Chocolate, alcohol, and caffeine (also hard I love chocolate and coffee and enjoy wine)

Eat high protein foods

Avoid Foods known to cause heartburn

 

 

Foods to Avoid

Alcohol

Carbonated beverages containing caffeine

Chocolate desserts or candies

Chocolate drinks

Cocoa

Coffee

Cream Sauces

Decaf Coffee

Fried Foods

Gravies

High fat foods

High fat meats

Pastries

Pepper

Peppermint oil

Spearmint oil

Tea (my green tea is allowed)

 

Limit

 

Butter (no dairy anyhow so no problem)

Citrus Juices 

Cream

Oils

Salad Dressings

Spicy foods

Tomato Juice

 

 

and it warns that my vitamin C will be insufficient.

 

Do you want the Lactose Free too?