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Gastritis or Glutening - Slippery Elm


cristiana

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cristiana Veteran

Hello experts!

I wondered if anyone has had recourse to use slippery elm for either gastritis or glutening.  I am not sure which I have but the pain is just below my sternum, a sort of burning gnawing pain that started a week ago and has waxed and waned to some degree depending on the food I have consumed (spicy/fatty food/dairy being the worst).  I was supposed to be seeing my gastroenterologist and was going to mention it to him but the appointment was wrong (hospital mistake).  If it doesn't improve in the next few days I'll have to see my GP.  

The sensation is pretty familiar - I felt like this before my diagnosis and going gluten free and have had similar episodes since (mostly due to imbibing NSAIDs and Iron - which I am afraid to say I took just before the attack) but this is probably the worst the pain has been since adopting the gluten free diet.  So my two questions are: 

a) has anyone found slippery elm useful for gastritis or glutening (I would take otc opremazole but last time I did I had terrible diarrhea).

and b ) can anyone tell if there is any easy way of discerning the difference between gastritis (which I think affects the stomach, doesn't it?) and glutening.

(I ask this as it could also just be glutening, too, thinking back on some possible cc over the last few weeks)

Thanks!

 


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tessa25 Rising Star

I don't know about slippery elm. If spicy foods are bothering your stomach, then I'd avoid them completely until the problem is gone.

 

Victoria1234 Experienced

I had this pain well before I went off gluten, and well before I had much worse symptoms. Seemed to resolve itself with gluten-free diet. I always suspected an ulcer but since my insurance and money situation was so bad never asked a doctor about it. Perhaps a glutening? But I'd baby myself with soothing foods and nothing strong until it goes away or you see the doc. Keep us updated!

cristiana Veteran

Thanks so much for replying, both of you.  I am beginning to get concerned as the pain was worse last night (all I ate was chicken and carrots for supper) and this morning my stool is yellow, although not runny.  I have googled and it doesn't look good - my hope is it is glutening and this is a celiac response.  I'd better go to the doctors tomorrow if things don't get better :(.  Feeling really sad as I only had a health crisis last month (benign lump removed from tongue) and was so looking forward to a spell of health over the summer. 

icelandgirl Proficient

Hi Cristiana,

I'm so sorry that you are not feeling well.  (((Hugs)))

I definitely had that before diagnosis and for some time after, which makes me wonder if you've been glutened.  Do you keep a food diary?  If so, have you checked the day or 2 before this started to see if anything stands out as the culprit?

It could also be a virus.

It's a good idea to go see your Dr if it persists though.

In the meantime, do eat things that are gentle on your system.  For me, I will put chicken breasts in the crockpot with broth and cook all day.  I will eat that with boiled potatoes and butter.  Bananas are another food that works well for me.  Sipping on ginger tea is soothing as well.

I do hope that you are feeling better...please let us know!

cristiana Veteran

Thanks so much for your reply, Icelandgirl. I shall buy some chicken and do exactly as you suggest - I think maybe where I went wrong a couple of days ago is the chicken was roast and pretty tough.  This sounds easier on the stomach.  

I think maybe I have been glutened and maybe a bug - apparently there is one going round.  The pain is so similar to before my diagnosis.  The only difference now is heartburn which I don't recall having before, but that might be due to the meds I've been taking.  I won't let it drag on - will see the doctor soon.  Yesterday was a much better day but I had vague tummy ache and heartburn at bedtime which was disappointing.

 

xxx

GFinDC Veteran

Hi cristiana,

One of the things they recommend people with heartburn do is to sleep in a more upright position.  Similar to sitting in bed.  Maybe try that and see if it helps.

 I had a stomach ulcer in the upper left part of the stomach for a while.  Whenever I laid on my left side the acid in my stomach would wash over that area and cause increased pain.  Might be something to try, laying in different positions.  That could narrow down the location of an ulcer to a specific area.

If it is pain from a glutening that could last a while but should dissipate in a few weeks.  Hopefully!


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cristiana Veteran
2 hours ago, GFinDC said:

Hi cristiana,

One of the things they recommend people with heartburn do is to sleep in a more upright position.  Similar to sitting in bed.  Maybe try that and see if it helps.

 I had a stomach ulcer in the upper left part of the stomach for a while.  Whenever I laid on my left side the acid in my stomach would wash over that area and cause increased pain.  Might be something to try, laying in different positions.  That could narrow down the location of an ulcer to a specific area.

If it is pain from a glutening that could last a while but should dissipate in a few weeks.  Hopefully!

This is very useful info, thank you!  Because regarding heartburn thinking about it  I've had it in the past after eating too much rich food - and then it went - but this is in a whole new league.  To the point that this morning my throat felt sore.

I'll eat early this evening - the bland chicken that Icelandgirl suggested - so hopefully food will repeat less on me at night.   I've also now got a PPI which will help till I see my doctor.

I hope to see my doctor on Wednesday but am dreading going down another take opremazole for a month and if you still have symptoms we'll do an endoscopy route.  

Do you mind my asking, how did you find out about the ulcer? Was it during your celiac scope or did it arise before or after that?  I have mild pain under my ribs - it is quite diffuse, just as it was before I was diagnosed - is that how it feels?  Although it started with severe cramps which have since subsided.  Sorry - quite a lot of questions!

 

 

GFinDC Veteran
On 7/10/2017 at 11:23 AM, cristiana said:

This is very useful info, thank you!  Because regarding heartburn thinking about it  I've had it in the past after eating too much rich food - and then it went - but this is in a whole new league.  To the point that this morning my throat felt sore.

I'll eat early this evening - the bland chicken that Icelandgirl suggested - so hopefully food will repeat less on me at night.   I've also now got a PPI which will help till I see my doctor.

I hope to see my doctor on Wednesday but am dreading going down another take opremazole for a month and if you still have symptoms we'll do an endoscopy route.  

Do you mind my asking, how did you find out about the ulcer? Was it during your celiac scope or did it arise before or after that?  I have mild pain under my ribs - it is quite diffuse, just as it was before I was diagnosed - is that how it feels?  Although it started with severe cramps which have since subsided.  Sorry - quite a lot of questions!

 

 

Hi cristiana,

My ulcer was sometime after going gluten-free.  It was more a constant pain in a definite area, not spread out or diffuse.  I wouldn't call it mild pain myself, but it wasn't so bad I couldn't function with aspirin and wine to get to sleep.  Aspirin fairly often though and that in itself is not good for your stomach.  Your throat feeling sore sounds more like a GERD type reflux issue to me.  I'm not an expert or something, but that seems more likely IMHO.  You have to be careful of PPI's as people get dependent on them to control symptoms.  They aren't really a good thing to take long term from what I've read.

cristiana Veteran

Thanks so much for that - yes, I'm rather concerned about taking them long term.  I hope I won't need to.  

cristiana Veteran

Four days into taking 20mg opremazole every day.  I have to say, it's funny stuff.  It does take away that awful gnawing feeling and heartburn but instead I've had burping, bloating in my upper abdomen which makes my shoulders and back ache, stomach pain as well as diarrhea - all of which appear to be the usual sort of symptoms you can get when you take it.  

My doctor says take it for a month and then that should be the trick. I'm reading a lot about acid rebound so I hope that doesn't happen to me.  I'm going to try to taper off the dosage at the end of the month rather than go 'cold turkey'.  If anyone is still reading this thread and has done this successfully I'd love some tips. 

The first day the opremazole didn't quite do the trick and I supplemented with some slippery elm made up in water.  It tasted like grass clipping tea but it works all right.

icelandgirl Proficient

Hi Cristiana,

I'm so sorry that you are still having issues!  

I have been on a PPI once.  I was diagnosed with h. Pylori at the same time as celiac, so my gut was a complete wreck!  I was put on 2 antibiotics, a PPI and Pepto.  I had read about acid rebound and decided to taper when it was time to come off.  I went from taking it daily to 1 every other day for a few days.  After that it was 1 every 3 days and after that I stopped.  I never did get the acid rebound, thankfully.

I really do hope you start feeling better!! ((((Hugs))))

knitty kitty Grand Master
17 hours ago, cristiana said:

Four days into taking 20mg opremazole every day.  I have to say, it's funny stuff.  It does take away that awful gnawing feeling and heartburn but instead I've had burping, bloating in my upper abdomen which makes my shoulders and back ache, stomach pain as well as diarrhea - all of which appear to be the usual sort of symptoms you can get when you take it.  

My doctor says take it for a month and then that should be the trick. I'm reading a lot about acid rebound so I hope that doesn't happen to me.  I'm going to try to taper off the dosage at the end of the month rather than go 'cold turkey'.  If anyone is still reading this thread and has done this successfully I'd love some tips. 

The first day the opremazole didn't quite do the trick and I supplemented with some slippery elm made up in water.  It tasted like grass clipping tea but it works all right.

Hi.  Hope you're feeling better.  

When I had Gerd, I found it helpful to lay on my left side after eating.  Laying on the left side straightens out the esophagus and the stomach, allowing for burps to escape more easily.  

Eating smaller, more frequent, bland meals helps, too.  Icelandgirl's crock pot chicken suggestion is a good one.  Throw in a carrot and some dill for healing chicken soup.

I hope you won't have to depend on the PPI very long.  They just made me feel worse in the long run.  Here's an article that discusses how use of some medications might cause further damage.  

https://www.celiac.com/articles/24743/1/What-Causes-Villus-Atrophy-in-Symptomatic-Celiac-Patients-on-a-Gluten-free-Diet/Page1.html

And one more of helpful information.

http://b12patch.com/blog/8-ailments-linked-with-gastritis-including-b12-deficiency/

Hope this helps.

cristiana Veteran
23 hours ago, icelandgirl said:

Hi Cristiana,

I'm so sorry that you are still having issues!  

I have been on a PPI once.  I was diagnosed with h. Pylori at the same time as celiac, so my gut was a complete wreck!  I was put on 2 antibiotics, a PPI and Pepto.  I had read about acid rebound and decided to taper when it was time to come off.  I went from taking it daily to 1 every other day for a few days.  After that it was 1 every 3 days and after that I stopped.  I never did get the acid rebound, thankfully.

I really do hope you start feeling better!! ((((Hugs))))

Icelandgirl - that's really helpful, thank you!  It was probably a long time ago but do you recall how long you were on the PPI?

cristiana Veteran
11 hours ago, knitty kitty said:

Hi.  Hope you're feeling better.  

When I had Gerd, I found it helpful to lay on my left side after eating.  Laying on the left side straightens out the esophagus and the stomach, allowing for burps to escape more easily.  

Eating smaller, more frequent, bland meals helps, too.  Icelandgirl's crock pot chicken suggestion is a good one.  Throw in a carrot and some dill for healing chicken soup.

I hope you won't have to depend on the PPI very long.  They just made me feel worse in the long run.  Here's an article that discusses how use of some medications might cause further damage.  

https://www.celiac.com/articles/24743/1/What-Causes-Villus-Atrophy-in-Symptomatic-Celiac-Patients-on-a-Gluten-free-Diet/Page1.html

And one more of helpful information.

http://b12patch.com/blog/8-ailments-linked-with-gastritis-including-b12-deficiency/

Hope this helps.

Thanks so much knitty kitty.  I have the same question for you - how long were you taking the PPI?

I have such a curious sensation under my left rib today - feels like bloating. I've been looking at pics on the computer and it seems the stomach is more left than right, so perhaps that is it.  Had a good day yesterday - did loads of walking.  Seems to keep the wind away!

I like the tips in your second piece - I would like to learn to eat like an Italian!

knitty kitty Grand Master

Hi, Cristiana,

Sorry, I don't remember exactly how long I was taking the PPI, omeprazole.  I believe it was less than a month.  It just made things worse.  I wouldn't recommend it.  I'm not a doctor and everybody is different, so you'll have to decide what is right for you.

What I did do was to go on a low histamine diet.  I found these sites very helpful. 

http://www.thepatientceliac.com/tag/mast-cell-activation-syndrome/

https://www.histamineintolerance.org.uk/about/the-food-diary/the-food-list/

Be aware that long term diarrhea can lead to malnutrition since nutrients don't stay in one's system long enough to be absorbed.  People with Celiac Disease are often deficient in the fat soluble vitamins A, D, E, and K, and in the eight B vitamins, plus minerals like calcium, magnesium, zinc and other trace minerals.  Get checked for vitamin deficiencies if possible.  And drink lots of water so you don't get dehydrated.

Try the low histamine diet for a few weeks, and see if that helps.  After you heal, you'll be able to add some foods back.  Keep a food journal to help pinpoint problematic foods.  

Hope this helps!

K ?

 

 

 

 

 

Jmg Mentor
On 7/11/2017 at 7:31 PM, cristiana said:

Thanks so much for that - yes, I'm rather concerned about taking them long term.  I hope I won't need to.  

I was at my local pharmacy a month or so ago and chatting to the pharmacist. She said she was doing 35-40 omneprazole prescriptions per day - this in a tiny pharmacy serving quite a small area. 

I think there's an epidemic of prescribing this drug here in the UK at present. The worrying aspect is that a lot of people who go in it for that 4-6 week period don't come off it again afterwards. I'm not sure if this is due to poor follow up from the GP's or just a lazy/pragmatic decision by the NHS to manage the various symptoms rather than tackling sources. Either way, like GFinDC above I'm worried there's a price to be paid further down the line. I feel a similar way about the overprescribing of SSRI anti depressants also. :(

Anyway, I don't want to worry you 5 days in Cristiana! Ignore my ramblings. I hope they clear things up, but don't stay on them for longer unless you absolutely have to!

cristiana Veteran

Hi all

I'm very grateful for your input, JMG.  Thank you too Knitty Kitty.

I'm willing to try anything not to get stuck on this stuff.

It's not the first time I've taken it and it wasn't a picnic then.  Back in 2013 I took some ibuprofen for bad earrache.  Then I got what I imagine was acute gastritis - I was never told if it was that,  but the doc stuck me on opremazole in response.  I think a month's dose? Well, it helped take the pain away initially but then the D. started in earnest.  

After a month of D. and a couple of weeks of stomach pain preceding that I'd fulfilled the criteria of 6 weeks changed bowel habits and under NHS recommendations was entitled to the celiac blood test.  Lo and behold I had raging antibodies.   I think I must have come off the opremazole around that time thinking that the problem must be gluten, not opremazole, and thinking the D must be to do with gluten.  I had an endoscopy and was diagnosed by the April. I had reached the penultimate damage grade on the Marsh Scale.   I can't recall is if the diarrhea ceased following coming off the opremazole, or because I came off gluten.  Or even when I stopped dairy for a while.  I wish I'd kept a diary!

I have diarrhea again today - I had a fairly fatty diet yesterday so the next thing I need to look into is is this normal with opremazole, to not be able to eat fat....

Anyway, I don't want to end up on this stuff (apparently half our town is taking it, according to our local nutritionalist) so I'll look at the sites you've posted too, KK.  

I'm so bad at this uncertainty. Underlying it all I worry that I have something really bad. Uggh.... I hate how I have become a hypochondriac through all this.

Thank you my friends for your help, it means a great deal as my family have enough to put up without hearing me going on about my ailments!

cyclinglady Grand Master
On 7/11/2017 at 11:31 AM, cristiana said:

Thanks so much for that - yes, I'm rather concerned about taking them long term.  I hope I won't need to.  

Think about something that could be unrelated to celiac disease.  What about posture?  Just being crunched over a phone or tablet for hours might impact the valve from your stomach to your esophagus.  Google it.  

I would really worry about PPIs, I do not think it is all about producing stomach acid.  Medical is great about fixing symptoms, but terrible in identifying the cause.  

cristiana Veteran
17 minutes ago, cyclinglady said:

Think about something that could be unrelated to celiac disease.  What about posture?  Just being crunched over a phone or tablet for hours might impact the valve from your stomach to your esophagus.  Google it.  

I would really worry about PPIs, I do not think it is all about producing stomach acid.  Medical is great about fixing symptoms, but terrible in identifying the cause.  

Actually, posture is an interesting thought.  This whole thing probably did kick off because of my aspirin (and iron) but over the last few months I have been doing far too much leaning over my computer.  The days I get out and get loads of exercise really helps.  You may have something there!  Thank you.

icelandgirl Proficient
On 7/15/2017 at 9:56 AM, cristiana said:

Icelandgirl - that's really helpful, thank you!  It was probably a long time ago but do you recall how long you were on the PPI?

Hi Cristiana,

I was on it daily for a month.  During that time I learned about acid rebound and was scared to experience it.  So when my month was over, I started tapering.  I didn't experience any issues coming off.  

I do hope you start feeling better.  Maybe it would be good to stay on a very mild diet for a bit.  I have lived on chicken, boiled potatoes, rice, bananas and berries for periods of time when I needed to.  I'm not suggesting that you need to go that far, but maybe your body needs some foods that are gentle to your system for now.

Feel better!

Whitepaw Enthusiast
On 7/8/2017 at 1:59 PM, cristiana said:

I wondered if anyone has had recourse to use slippery elm for either gastritis or glutening.  I am not sure which I have but the pain is just below my sternum, a sort of burning gnawing pain that started a week ago and has waxed and waned to some degree depending on the food I have consumed (spicy/fatty food/dairy being the worst).

i have similar symptoms now, thanks to sudden new dairy intolerance after increased dairy consumption in April and a McDonald's milkshake in early May.   i think sometimes we start increasing certain foods or a variety of foods, and then it catches up.   I thought at first I'd been glutened, but by the time the test kits arrived I was suspecting dairy and a variety of dietary indiscretions more. 

I am now treating with Pepcid (famotidine) 20 mg., twice a day, supplemented by Tums and simethicone (gas-x). I just saw a new PCP and he OK'd this, said Pepcid is far less effective than PPIs, but to give it a 2 week trial. 

For the last two months, I was using only Tums, simethecone, Kaopectate (no dye like Pepto), and experimented with fennel and peppermint tea.  The fennel tea helped a lot, but I read negative things about it, so stopped.  

Other things that are helping: I sleep propped up on my left, wear loose pants, bra half-hooked, eat tiny meals, walk after dinner, limit beverages with meals to decrease overall volume at once in my stomach, and don't eat within a few hours of bedtime.  Acid production typically increases overnight, so I get up and have Tums if my symptoms wake me up.  I find driving makes it worse, even if I slightly recline the seat back;  my innards just get too cramped in car seating.  Standing and walking make it better.  Walking helps digestion, so walking with an uncomfortable tummy actually feels better when you're done, even if it initially seems to make it worse. 

I was on Prilosec for a few years pre-Celiac diagnosis.  I planned to wean off after diagnosis and a few months of gluten-free eaing, but quit cold turkey when it started raising my blood pressure.  So I chose to avoid that now.   My GI had recommended Tums for a previous bout of indigestion, so I used that as a first recourse for the current problem.  

Other things i tried for this current bout that were / weren't effective:

- Probiotics;  GI recommended Align (eyeroll ... it has dairy!) or Culturelle (it has inulin, which my body often doesn't like).   i chose the Culturelle, and stayed with it for the 2 weeks prescribed.  Had awful lower GI symptoms for the whole two weeks, so I switched to Florijan3 ... not much better.  Tried a couple others briefly, then gave it up.  When I quit probiotics, the lower GI got better, and I was back where  I started, with upper GI symptoms.

- Low acid, low FODMAP, low lectin foods:  eating low lectin foods that were also low acid made the biggest impact for me, but then my dietary indiscretions (besides the McDonald's shake and increased dairy) had been mostly high lectin/ high acid foods.   I spent a few weeks eating mainly rice, Earth balance margarine, a little soy milk or rice milk, airy (non heavy) nondairy gluten-free bakery bread, salmon, tuna, sweet potatoes, chicken.  I stopped oatmeal, salads, and many veggies.  I avoided nut products, except macadamia milk, unsweetened.

I've lost most of my summer due to this illness, but 2.5 months later i am finally feeling good enough to start doing more, thanks to the above.

Getting back to your original question, I have never tried slippery elm ... but what I've written above has helped tremendously.  Hope something in here might help you. 

 

cristiana Veteran
9 hours ago, Whitepaw said:

Other things that are helping: I sleep propped up on my left, wear loose pants, bra half-hooked, eat tiny meals, walk after dinner, limit beverages with meals to decrease overall volume at once in my stomach, and don't eat within a few hours of bedtime.  Acid production typically increases overnight, so I get up and have Tums if my symptoms wake me up.  I find driving makes it worse, even if I slightly recline the seat back;  my innards just get too cramped in car seating.  Standing and walking make it better.  Walking helps digestion, so walking with an uncomfortable tummy actually feels better when you're done, even if it initially seems to make it worse.

Whitepaw - thank you for this very instructive post.  I have highlighted part of your post for anyone else who is looking for tips as I too have found these tips do help.  Having read most of what Dr Google has to say on the subject this is advice that comes up a lot again and again.  Tight clothing is definitely something to avoid, and I cannot believe how when this thing was at its worse just how uncomfortable it was to bend down to get something out of the fridge!

 It is so interesting to me that walking is part of the medicine - I suppose it helps getting things moving. I don't belch at all really if I walk after a meal.

I am opening up my capsules and taking the contents (without crunching the little beads) with water, which is a tip given on the packet for people who can't swallow pills.  In addition I am gradually reducing the dosage by a few beads a day (something else I read) and suddenly my stomach feels so much better.  I wonder if this is because I am reducing the dosage or getting rid of the capsule!

I read that Manuka honey with a small piece of bread between meals helps - it certainly is for me. Plus peppermint tea.  I was drinking Fennel but ran out so perhaps, in view of what you say, it is just as well.

I am so sorry you have lost so much of your summer to this thing.  I totally understand what you mean by that - the last three weeks have been horrid. Let's hope we can enjoy a good symptom free autumn!

Whitepaw Enthusiast

Hi Cristina,

Thank you ... 

A couple other things to consider:

- Your stomach is about the size of your fist.   Lol, I always think of it as being more like 2-3 fists.  I recently read that eating smaller amounts that do not fill the stomach makes it easier for the stomach to do its work.   i have started matching meals to my fist size or less, and do much better.   I may have to eat more often, but I do feel better.   I also have to watch beverages with meals.   I've taken to sipping only a little water, to keep the total intake amount to fist size.

- Many women's pants have built in tummy control.  Sometimes it's an obvious panel.  More often, they just extend the front pocket material to the center front of the pants and stitch it along the zipper line.   This has caused me endless stomach upset when my stomach is bad.   Cutting the pocket fabric extension relieves that pressure and allows the front of the pants to stretch as you move.  I usually snip about 2/3 of the length, right along where it is stitched to the zipper.   I  start from the bottom and work up toward the waist.  

I think what I read about fennel tea had something to do with cancer risk, but you may want to look it up yourself. 

I will try the honey and bread.  I also find that Schar Shortbread cookies settle my stomach. 

If you need to find a lovely light tasty bread, try Gluten Free Specialties (formerly called Celiac Specialties).  Their bread varies between being very light and airy (sometimes has holes) and being somewhat more dense, as the weather impacts the final product.  It's the closest to regular gluten bread that I've ever tasted, and it is soothing when I have indigestion. I believe they have free shipping this summer.  http://www.baking-glutenfree.com/  

 

 

 

 

cristiana Veteran

Thanks so much, Whitepaw.

We can get Schar products in the UK and they are really good - they make the nearest thing to a Twix that I have found, although I think I have had a rather negative run in with chocolate in the last 24 hours (still not healed enough to eat it, obviously) so won't buy one of their 'Twixe's' for a while.  But I agree, shortbread is easy on the stomach.   

I have to say I had to laugh whilst reading your post as I read it wrong first time.  Here in the UK 'pants' means undergarments/briefs/knickers... (or whatever the 'mot juste' is in American English).  We use the word trousers where Americans say 'pant's - it causes quite a bit of confusion.  But either way, all that elastic and support is a nightmare! In fact, since my celiac diagnosis I can hardly cope with anything restrictive around my waist. I thought things would improve but they never did.  A good tip, thanks.:D

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      Usually when I digest gluten or wheat I have a 4 hour window before reacting.  If it is immediate it may be an intollerence to another food.  Dairy, Frutose, and bacteria (SIBO) will react with many of the celiac disease symtoms.Has your Doctor ran a  Fructose test which is measuring your Fruit Sugar?  A Hydrogen Beath Test which checks your intestinal bacteria and Dairy?After my biopsy and blood work, these (3) tests were also ran, along with allergy tests, which allery test was sent out of State.  It was a mouth swab. How fast you heal depends on the diet you are following… The following are my personal recommendations to healing. I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. They need a good support group, with people who have been through this and knows what works!  This is what I have found will work for you.                                                                                            First 6 weeks should be:                                                                                                                                 lean meat (beef, pork, chicken, turkey, salmon, sardines, buffalo, deer)                                                   fresh vegetables (steamed or roasted with a little Olive Oil) with 2 cups per day being raw (5 servings; a serving is 1/2 cup)                                                                                                                                      fresh fruit (3 servings; include strawberries, blackberries and blueberries daily)  Makes good shakes with Almond milk.                                                                                                                                        A hand full of almonds daily (pecans and walnuts can be substituted)                                                        brown rice, lentils, Citrucel daily (or the equivalent) Good source of fiber. I use Calm because my body doesn’t absorb Magnesium and I only need to take once in evening.                                                    No dairy of any kind (milk, cheese, yogurt, No breads, No past,  No oats, No pizza, No gluten-free beer, No snacks like cake, biscuits, pies, donuts.                                                                                                Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us.                                                                                              10% of people with gluten-free will be intolerant to dairy                                                                                  10% can not tolerate oats                                                                                                                     After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food.                                                                                                  Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable.                                                                                                                                              You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. This works if you have constipation or diarrhea.                                                                                                        Meanwhile make sure you have had a Dexa test (bone density) and a blood test to check your vitamin and mineral levels: Zinc, D,K,B,C and iron levels.                                                                                  Don't take supplements while healing as your body is not accepting them and they will flush through your body.                                                                                                                                              Have you had a breath test for Dairy, Fructose, and bacteria overgrowth? Should have done when first diagnosed.                                                                                                                                        How fast you heal depends on the diet you are following… The following are my personal recommendations to healing. I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. They need a good support group, with people who have been through this and knows what works! This is what I have found will work for you. First 6 weeks should be: lean meat (beef, pork, chicken, turkey, salmon, sardines, buffalo, deer) fresh vegetables (steamed or roasted with a little Olive Oil) with 2 cups per day being raw (5 servings; a serving is 1/2 cup) fresh fruit (3 servings; include strawberries, blackberries and blueberries daily) a hand full of almonds daily (pecans and walnuts can be substituted) brown rice lentils Citrucel daily (or the equivalent) Good source of fiber. No dairy of any kind (milk, cheese, yogurt) No breads No pasta No oats No pizza No gluten-free beer No snacks like cake, biscuits, pies, donuts. Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us. 10% of people with gluten-free will be intolerant to dairy 10% can not tolerate oats After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food. Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable. You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. This works if you have constipation or diarrhea. Meanwhile make sure you have had a Dexa test (bone density) and a blood test to check your vitamin and mineral levels: Zinc, D,K,B,C and iron levels. Don't take supplements while healing as your body is not accepting them and they will flush through your body. Have you had a breath test for Dairy, Fructose, and bacteria overgrowth? Should have done when first diagnosed. Remember to have a tTg IgA blood test repeated at 6 months then every year after, with another scope done in 3 years. Only way to know if you are healed. I don’t have all the answers; we are learning everyday new ways of doing things, but this is a start! Remember to have a tTg IgA EMA blood test repeated at 6 months then every year after 
    • Wheatwacked
      Marsh 3b is the Gold Standard of diagnosis for Celiac Disease.  Until recently, regardless of antibody tests, positive or negative, you had to have Marsh 3 damage to be awarded the diagnosis of Celiac. As I understand you,  you were having constant symptoms..  Your symptoms improved on GFD, with occassional flare ups. Did your doctor say you do and you are questioning the diagnosis? Regarding your increasing severity when you get glutened it is "normal".  Gluten acts on the Opiod receptors to numb your body.  Some report withdrawal symptoms on GFD.  I was an alcoholic for 30 years, about 1/2 pint of voda a day. Each time I identified a trigger and dealt with it, a new trigger would pop up.  Even a 30 day rehab stint, with a low fat diet (severe pancreatis) during which I rarely had cravings.  Stopped at a Wendys on the way home and the next day I was drinking again.  20 years later, sick as a dog, bedridden on Thanksgiving, after months of reasearch, I realized that gluten free was my Hail Mary.  Back in 1976 my son was diagnosed at weaning by biopsy with Celiac Disease and his doctor suggested my wife and I should also be gluten free because it is genetic.  At 25 years old I felt no gastro problems and promised if I ever did I would try gluten free.  Well, I forgot that promise until I was 63 and my wife 10 years dead.  Three days of gluten and alcohol free, I could no longer tolerate alcohol. Eleven years gluten and alcohol free, with no regrets. Improvement was quick, but always two steps forward and one back.  Over time I found nineteen symptoms that I had been living with for my entire life, that doctors had said, "We don't know why, but that is normal for some people". Celiac Disease causes multiple vitamin and mineral deficiency.  It is an autoimmune disease, meaning your immune system B and T cells create antibodies against ttg(2) in the small intestine in Celiac Disease, and sometimes ttg(3) in skin in Dermatitis Herpetiformus.  'Why' is poorly understood.  In fact, it wasn't even known that wheat, barley and rye gluten was the cause.  Celiac Disease was also called Infantilism, because it was deadly, and believed to only be a childhood disease. So, as part of your recovery you must deal with those deficiencies.  Especially vitamin D because it contols your immune system.  Virtually all newly diagnosed Celiacs have vitamin D deficiency.  There are about 30 vitamin and minerals that are absorbed in the small intestine.  With Marsh 3 damage you may be eating the amount everyone else does, but you are not absorbing them into your system, so you will display symptoms of their deficiency.   As time passes and you replenish your deficiencies you may notice other symptoms improve, some you did not even know were symptoms. Our western diet has many deficiencies built into it.   That is the reason foods with gluten are fortified.  Gluten free processed food are not required to fortify.  Vitamin D, Iodine, choline.  The B vitamins, especially Thiamine (B1) run deficient quickly.  We only store enough thiamine for 2 weeks so the symptoms of Gastrointestinal BeriBeri can come and go quickly.  Magnesium, zinc, etc. each having its own symptoms affecting multiple systems.  High homocystene, an indicator of vascular inflamation can be cause by deficient Choline, folate, B6 and or B12.  Brain fog symptoms by deficient choline, iodine, thiamine B1. Dietary intake of choline and phosphatidylcholine and risk of type 2 diabetes in men: The Kuopio Ischaemic Heart Disease Risk Factor Study  
    • Rogol72
      I cut out the rice because it was affecting my stomach at the time ... not necessarily dermatitis herpetiformis. It was Tilda Basmati Rice, sometimes wholegrain rice. I was willing to do whatever it took to heal. Too much fiber also disagrees with me as I have UC.
    • trents
      But you didn't answer my question. When you consume gluten, is there an identifiable reaction within a short period of time, say a few hours?
    • Scott Adams
      You can still have celiac disease with negative blood test results, although it's not very common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/   
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