Celiacs upper gi(stomach) symptoms

[Lyns5201]

Hello,I was finally diagnosed with celiacs after a blood test,genes testing and two endoscopies.I was just curious if anyone else has experienced any upper gi symptoms in the stomach? What where your symptoms of celiacs disease at diagnoses ? I’ve been tested for just about everything and only thing that has come back abnormal is celiacs testing. I’ve been gluten free about three weeks now and still having some symptoms (not all). How long does it typically take to heal ?

[cristiana]

Hello Lyn

My gastric symptoms at diagnosis included a burning stomach, diarrhea and bloating.

I seems to recall my diarrhea got a lot better within a few days of adopting a gluten free diet but it didn't go away completely and I had bloating still. My doctor suggested I gave up dairy for a while and that helped tremendously.   

Lactose intolerance is often associated with undiagnosed coeliac disease.  However, it is usually temporary, while the gut is healing.   Once coeliacs have been following the gluten free diet for some time it ceases to be a problem for most.   Are you still consuming dairy products?

I also had problems with oats (even "pure" gluten free ones, the only ones coeliacs should eat).  They they contain the protein avenin which in a minority of coeliacs can cause similar symptoms to gluten.  In the UK, where I live, coeliacs are normally advised to give up oats in the initial healing period, and then reintroduce in six months to a year, to see if they cause issues.

Keep a food and symptoms diary and see if anything else might be affecting you.   In the short term, I had issues with lentils and soya which hurt my stomach when I consumed them.  That lasted for a few months.  I now have no issues with them. 

Be absolutely sure there is no gluten sneaking in anywhere - this will only prolong your symptoms.  This guide will help:

Incidentally, I happen to suffer from gastritis.   I get gastritis when I'm glutened, and when I take NSAIDs, certain antibiotics and eat too much rich food.   The principal symptom is a burning stomach, but I can get bloating and heartburn.   I normally treat gastritis by eating bland, healing foods like chicken, rice, bananas, applesauce, etc, staying away from coffee and tea, spicy and fatty foods etc etc.  I normally take a very short course of omeprazole or a similar PPI when I get a bout and it usually gets better after a few days.   If you think you may have gastritis too speak to your doctor.    

Cristiana

 

Edited October 16, 2021 by cristiana

[Lyns5201]

6 hours ago, cristiana said:

Hello Lyn

My gastric symptoms at diagnosis included a burning stomach, diarrhea and bloating.

I seems to recall my diarrhea got a lot better within a few days of adopting a gluten free diet but it didn't go away completely and I had bloating still. My doctor suggested I gave up dairy for a while and that helped tremendously.   

Lactose intolerance is often associated with undiagnosed coeliac disease.  However, it is usually temporary, while the gut is healing.   Once coeliacs have been following the gluten free diet for some time it ceases to be a problem for most.   Are you still consuming dairy products?

I also had problems with oats (even "pure" gluten free ones, the only ones coeliacs should eat).  They they contain the protein avenin which in a minority of coeliacs can cause similar symptoms to gluten.  In the UK, where I live, coeliacs are normally advised to give up oats in the initial healing period, and then reintroduce in six months to a year, to see if they cause issues.

Keep a food and symptoms diary and see if anything else might be affecting you.   In the short term, I had issues with lentils and soya which hurt my stomach when I consumed them.  That lasted for a few months.  I now have no issues with them. 

Be absolutely sure there is no gluten sneaking in anywhere - this will only prolong your symptoms.  This guide will help:

Incidentally, I happen to suffer from gastritis.   I get gastritis when I'm glutened, and when I take NSAIDs, certain antibiotics and eat too much rich food.   The principal symptom is a burning stomach, but I can get bloating and heartburn.   I normally treat gastritis by eating bland, healing foods like chicken, rice, bananas, applesauce, etc, staying away from coffee and tea, spicy and fatty foods etc etc.  I normally take a very short course of omeprazole or a similar PPI when I get a bout and it usually gets better after a few days.   If you think you may have gastritis too speak to your doctor.    

Cristiana

 

Ok thankyou for all the info I really appreciate it,I’ve felt very hopeless lately and depressed to be honest worried things will never truly get better,I’m glad to hear there’s hope....also soy will also burn my stomach a lot I’ve noticed right now if I drink anything with it in it... did yours do that, is that what you mean by it gave you symptoms as well? In my biopsies it is confirmed that my stomach is also inflamed particularly the lower part right next to where small intestine begins, and they do call it mild gastritis,they’ve ran so many tests on me and cannot come up with any other cause for it,the only thing that’s come back odd is the celiac panel and now biopsies of my intestine can confirm that...I stay away from anything and everything acidic and have been careful about looking out for gluten,but my stomach still burns like I’m eating gluten and also a new symptoms is it feels like my stomach is eating itself and like I’m always hungry.. but then again only been gluten free about three weeks...I know everyone is definitely different but how long did it take you to have real relief from the burning and knawing pain in your stomach?did it ever truly go away and in your endoscopy did they ever say if your stomach was inflamed too?sorry to ask so many questions,I can use all the advice I can get right now,I’ve been in so much discomfort and a lot of celiacs say they haven’t had the inflammation and burning in the stomach which worries me but some say they have too,I’m not sure why this is.I always feel I’m doing something wrong since all the symptoms are not gone yet. Was gluten-free bread ok for you with gastritis ? Also it didn’t help I was gluten free for a month and then had to get back on gluten for a month to repeat endoscopy, this made my body really mad at me I feel like and everything got so much worse since then. I just hope there’s real hope everything will get better and I can feel good and normal again.Thankyou for the response so much!also might I add my main questions is really do you think celiacs can cause over time inflammation in the stomach and burning stomach irritation as well as the classic celiac symptoms ?also I know there are over 200 different symptoms to this disease and it can be so hard to pin point, the burning stomach is actually what causes me to go in and see a specialist in the first place, we had thought it may be an ulcer. 

[Wheatwacked]

My son when he was diagnosed at 6 months old was put on Nutramgen Infant formula for six months. It is hypoallergenic and has all the vitamins and minerals for complete nutrition, including potassium. Unfortunately for an adult you would have to eat a whole can a day, around $47, and it doesn't taste good. There isn't anything, to my knowledge, equivalent for adults.  We are left to muck around. If you are not sure of an ingredient, refer to Scott's Guide that Chritiana refered to above.

Celiac Disease is a disease of malabsorption, so in addition to finding food with calories for energy that does not have gluten, you need foods that will replenish the vitamins and minerals you have lost though damage to your small intestine and also any deficiencies caused by avoidance. They will help to heal faster. Vitamin D is on the top of my list because increasing your vitamin D plasma level helps with mood and research is showing it also helps control the autoimmune antibodies triggered by  gluten.   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7231074/

Lately I found home cooked pinto, garbanzo and red beans to be very nutritious and cheap. I ususally have them combined with parsely, tomato, cucumber, red bell pepper, and shredded cabbage with a little salt for dinner.  For a snack I'll eat a pound of watermelon.  Breakfast is 90 grams (3 1/2 ounces) rolled oats with a tablespoon (15 grams) of flaxmeal.  Two or three glasses of 100% Grass fed milk completes the calcium, potassium, and phosphorous for bone health.  Home made fermented pickles are easy to make, only takes a week and helps with Lactose intolerane. Commercial sterilization kills the beneficial bacteria. You know those jokes about pregnant women craving Pickles and Ice Cream? Cod Liver oil for vitamin A and 2 ounces of almonds for vitamin E.

Most important a diary so you can find patterns and track your progress.

I've read that in a way Celiac Disease not ignored is a blessing because it's an early warning sign. The change in diet may save you from a future of heart disease, metabolic disease, and arthritis. Check out Dr Furhman's Six Week Plan it may give you some ideas of good stuff to eat.

In my opinion potatos and potato chips have gotten a bad rap. The Irish survived on them from 1590 until the great potato famine.    https://blog.crystal-travel.com/irelands-relationship-with-the-potato

[cristiana]

Hi Lyn

Hang in there... it's very early days and you will still have a lot of inflammation which will cause these sort of symptoms.  

I was exactly where you are now when I was first diagnosed and I panicked and really thought I'd never get better.  Unfortunately, this is definitely one of those instances where the word "patient" not only is a word for a person that a doctor treats, but it's also something that we coeliacs have to become as we recover. 😃  In a few months' time I am sure you will be looking back and feeling so much better, and not only that, you may find that other symptoms that you never associated with coeliac disease have gone away.  My skin is so much better since I went gluten free, and I hardly get painful headaches any more, for example.

This is a holding email as I've got a very busy Sunday ahead of me, but I just wanted to say, yes, soya really hurt my stomach, even to drink.  A soya yoghurt would make my stomach area burn, whereas it doesn't any more.  Ditto lentils.   

Will post again soon, Lyn...  Try to relax and not to worry, easier said than done, but as I say, it is still very early days yet.

C.

 

[cristiana]

13 hours ago, Lyns5201 said:

Ok thankyou for all the info I really appreciate it,I’ve felt very hopeless lately and depressed to be honest worried things will never truly get better

Lyn... answers in purple.

Some coeliacs suffer from anxiety or depression around the time of diagnosis, it's not uncommon.   Feeling unwell is enough to make one feel worried and depressed, but some vitamin and mineral deficiencies can also affect people's mental wellbeing.  Have you had an vitamin and mineral blood tests - such as B12, iron etc?  Do you have any deficiencies?

 In my biopsies it is confirmed that my stomach is also inflamed particularly the lower part right next to where small intestine begins, and they do call it mild gastritis,they’ve ran so many tests on me and cannot come up with any other cause for it,

I remember reading, I think on the Daily Strength forum which has a lot of help for reflux and gastritis sufferers,  someone saying they had "Mild Gastritis" but there was nothing mild about it!  I couldn't agree more!   I started this thread a few years ago when I was struggling with gastritis - it's a bit long, but please do read it, as you should pick up some helpful info on the way.  

https://www.celiac.com/forums/topic/118711-gastritis-or-glutening-slippery-elm/

.I know everyone is definitely different but how long did it take you to have real relief from the burning and knawing pain in your stomach?did it ever truly go away and in your endoscopy did they ever say if your stomach was inflamed too

I have had episodes of this type of gnawing pain for 2-3 months at a time -  when I was first diagnosed and also a few years later when I was inadvertently glutening myself with some iron supplements.  But a dear friend of mine - not a coeliac - also had it around the same time as me during that second spell, and we'd spend hours swapping tips and encouraging each other to try new strategies. That second bout was disconcerting so I had another endoscopy but it took a while for my appointment to come through and when I actually had it there was no more inflammation either in my gut or in my stomach!  But I have no doubt, because my symptoms are so similar to my friend's, that it was gastritis.

Was gluten-free bread ok for you with gastritis ? 

Gluten free bread is fine but I did read on a gastritis forum not to overdo white carbs as it can make things worse.  I have no idea if that is true but you might wish cut back a little and see how you go.

might I add my main questions is really do you think celiacs can cause over time inflammation in the stomach and burning stomach irritation as well as the classic celiac symptoms ?

I can't speak for everyone but I always get burning pain in my stomach area (just under my ribs) every time I am glutened.   I had it before I was diagnosed, and I get it every time I am I inadvertently consume gluten.   I also get it when I take certain medication (NSAIDS, antibiotics) or eat too much rich food.  Sometimes I get heartburn and bloating too, with it.

Try not to get too downhearted - you know you have gastritis.  Whatever the cause, it will take a little a bit of time to figure out helps you to feel better.   There are some natural products there that some people find soothing, like slippery elm.  If you can, I suggest you try to eat small, regular meals (five meals a day, rather than three large meals).    Look up gastritis on this and other forums, do a bit of homework, and see what tips you can pick up.  Also, remember to keep a food and symptom diary.   

And avoid alcohol - some people say they can drink with gastritis, but my consultant warned me off it.   Little did she know I never drink except I did on one occasion, to be social at a baptism, and boy my stomach hurt after that!

 

Edited October 17, 2021 by cristiana

[Lyns5201]

23 minutes ago, cristiana said:

 

Thankyou so much for the responses and all the tips as well,I appreciate it all so so much..I dont know what else to do at this point but all others for advice and help as many celiacs I’ve talked to have not suffered from this symptom so I always get concerned it may not even be related then. But the stomach inflammation is so close to my small intestine I feel it could be related.in your first endoscopy you had gotten done to diagnose celiacs in the first place did they see any inflammation in the stomach for you? Mine is worse in the morning on an empty stomach and also seems to hurt worse after my nexium I take in the mornings that they put me on that doesn’t seem to help at all and initially really makes my stomach burn but I’m also scared to get off of it cause I don’t know if it actually is helping and I just don’t know it..my burning will literally feel like it’s in the pit of my stomach like hot coals...when I had to get back on gluten for a month for a second endoscopy about three weeks in it became unbearable and I gave up and went gluten free again,I was so so miserable at that point I couldn’t eat anything without my stomach burning excruciating almost. And nothing soothes it really and it’s been pretty bad ever since being back on gluten again even though I’ve now been gluten free three weeks,I can’t find foods to soothe it enough but I will read that forum you suggested...as I’ve read before , there has to be a root cause to gastritis and I’m wondering if mine is celiacs disease since they’ve tested for everything else that can cause it and it’s all come back normal. I just wish I knew a time frame for when my stomach might feel somewhat better. But I know patience is a big part of this..it’s just so hard,I’m only 21 and I’m a mother. I want to feel better for myself as well as for my son. All this started after my sons birth.I’ve read celiacs can be triggered by birth also. 

[cristiana]

Hi Lyn

I don't think gastritis has ever been mentioned in my various endoscopies but that could be to do with timing - it's all a bit vague in my mind now but certainly by the time I had my second bout I waited around for a while for testing, so the worst of it was over.  The point is you have been diagnosed with it and that's good in a way - you know what you are dealing with.  Keeping gluten out of your diet will target your coeliac symptoms, and the gastritis, whether connected or unconnected, is eminently treatable.  

Incidentally, have you spoken to your doctor about a treatment plan for your gastritis?

Cristiana

[Lyns5201]

2 minutes ago, cristiana said:

Hi Lyn

I don't think gastritis has ever been mentioned in my various endoscopies but that could be to do with timing - it's all a bit vague in my mind now but certainly by the time I had my second bout I waited around for a while for testing, so the worst of it was over.  The point is you have been diagnosed with it and that's good in a way - you know what you are dealing with.  Keeping gluten out of your diet will target your coeliac symptoms, and the gastritis, whether connected or unconnected, is eminently treatable.  

Incidentally, have you spoken to your doctor about a treatment plan for your gastritis?

Cristiana

Yes, we’ve really been trying to find the cause in order to know how to really treat it. But since there’s not a obvious cause only thing they’ve seen is celiacs, have not been able to give me a treatment plan for it. 

[cristiana]

1 minute ago, Lyns5201 said:

Yes, we’ve really been trying to find the cause in order to know how to really treat it. But since there’s not a obvious cause only thing they’ve seen is celiacs, have not been able to give me a treatment plan for it. 

Have you been tested for an H-pylori infection?   

 

[Mary Gee 68]

3 hours ago, cristiana said:

 

I'm 68 and still going through the diagnostic process.  I've had a lifetime of stomach issues.  I was on Omeprazole for 25 years.  

I stopped eating gluten and my stomach felt so much better. Then I found that I have a lot of other food intolerances as well. Watermelon, Oats, and many others.  My new primary suggested I may have Celiacs and IBS.  My blood work showed markers for celiacs.  I also used to get rashes especially on my elbow areas.  I am due to have an endoscopy in December.  I am sick a lot.  Stomach cramps, acid, brain fog, lethargy.  Stopped eating dairy recently.  That helped a lot.  I think I'm gradually getting a handle on it.  I know I should be eating gluten before the test but I get so violently I'll.  The Dr. Said that she would not tell me to eat it, but if I was to eat it now would be the time.

I am somewhat dismayed that no one picked up on this.  My new primary physician was amazed that I was never tested.  I am overweight which is probably the reason. My mom Grandfather and Aunt all had stomach issues.

This web site has helped me out. Hang in there I think it gets better.

[Lyns5201]

1 hour ago, cristiana said:

Have you been tested for an H-pylori infection?   

 

Yes, I’ve been tested for everything that can cause it really, like I said though, they’ve only seen celiacs come back in all my labs and tests.

[cristiana]

I live in the UK.  When my friend and I first went to the doctors with our burning stomach pain (we attend the same GP surgery) we were given PPIs.  It tends to be that in this country doctors try a PPI first and if that doesn't work they will conduct an endoscopy, testing for H pylori and ulcers etc.   But they tend to give PPIs a few weeks to work first, without it seems to me worrying too much at first about what is causing the symptoms!

For some fortunate people (such as my husband, who had gastritis for a while) a few days or weeks of PPIs will solve things.  Some have to "up" the dosage in order to get results.

Ranitidine was a medication that was available when I first had this issue and I went onto that eventually as I found omeprazole caused bloating. I don't think it is available anymore.

But I didn't want to take PPIs/ranitidine long term so I worked quite hard at trying to treat it with life style and diet changes.   A summary for me was:

• Eating five small meals a day
• Avoiding fatty and spicy food, tomatoes, citrus fruit, coffee, tea and alcohol.
• Eating food that is easy on the stomach, such as bananas, rice, toast, applesauce; slow cooked chicken, cooked for four hours on a low heat with root vegetables so the meat literally fell off the bone and was easy to digest; zero fat Greek yoghurt with Manuka honey.
• Drinking lots of water and chamomile tea, or hot water, sometimes with a fine slice of ginger in it for flavour.
• Trying not to eat too late at night so my stomach had 12 hours of no food to rest; sometimes I found I got very hungry and would have a couple of shortbread biscuits before bedtime which for some reason really helped settle my stomach

As I began to feel better I slowly introduced more food, and tapered off my PPI.

Now this worked for me - you might like to give it a try.  

I did find stress was a very aggravating factor at the time and if you can, try to find ways to relax (easier said than done with a little one to care for, I know!)   I did read on the NHS gastritis website that smoking can cause gastritis, something else to consider if you are a smoker.

Hopefully some of this advice will help.   I am afraid I am going to be away from the computer for a little while now but I am sure others will be able to help if you have any other questions.

Cristiana

 

[knitty kitty]

@Lyns5201,

So sorry to hear what a rough time you're having.  

Let's keep in mind that Celiac Disease damages the small intestine making absorption of vitamins and minerals difficult.  Vitamin deficiencies can impact our health in many ways.  Our bodies use vitamins to make other chemicals and enzymes that help our bodies function properly and heal itself.  

Niacin (Vitamin B3) is converted in our bodies to make Tryptophan.  Tryptophan is needed to make a neurotransmitter called serotonin (the brain chemical that makes us feel good).  Tryptophan can also be converted into Melatonin.  Melatonin is familiar to us as the chemical that helps us sleep.  Both Melatonin and Tryptophan have been shown to promote gastrointestinal healing and protection in gastritis and Gerd (gastroesophageal reflux disease).  

I take Tryptophan myself.  I've had a recent back injury which necessitated taking prescription pain medication and antispasmodic medication which wreaked havoc on my digestive tract causing gastritis, GERD, constipation, depression, and a burning sensation all the way down.  I was also prescribed a PPI which I've taken sporadically for that burning sensation.  I hesitated to take the PPI regularly because PPI's can cause malabsorption and result in vitamin deficiencies.  But I did take the PPI at night, otherwise I'd wake in the middle of the night with that burning sensation, which leads me to Thiamine (Vitamin B1).

I take Thiamine regularly, mainly because I have Type Two Diabetes. Thiamine helps the pancreas produce insulin.  After my injury and subsequent gastrointestinal problems that demanded a liquid diet, I increased my dosage.  I take the form of thiamine called Allithiamine (TTFD).  

Thiamine is necessary for the brain and Vagus nerve to work properly.  The Vagus nerve controls the function and motility of the digestive tract and secretions of stomach acid and insulin.  Thiamine is also used to convert the foods we eat into energy so our bodies can function properly and repair our wounds.  

With the increase in Thiamine and Tryptophan, I was able to go from a liquid diet to a low carbohydrate diet (meat and nonstarchy vegetables).  This is the AutoImmune Protocol diet that I revert to when I'm ill or glutened.  

A diet full of carbohydrates when my GI tract is upset is a bad idea.  If I'm not digesting well and have reduced stomach acid (hypochlorhydra caused by the PPI), the carbohydrates tend to get digested by intestinal bacteria causing bloating and pressure on my small intestine and stomach resulting in gastritis and Gerd.  The intestinal bacteria that digest carbohydrates can overpopulate and spread into the small intestine where they are not meant to live (Small Intestinal Bacterial Overgrowth).  By keeping my carbohydrates low, the bacteria don't overpopulate.  Thiamine also keeps them in check and discourages them from spreading into the small intestine.  Thiamine also helps regulate when that stomach acid is released.

With the increase in tryptophan and thiamine, I'm sleeping better and the depression has lifted and I'm much less anxious.  I sleep on my left side.  I prop pillows and extra blankets around so my head is raised.  Because the stomach drains off to the left, sleeping on my left side causes my stomach contents to drain on down into my small intestines instead of sitting there burning my stomach and also preventing the stomach acid from going up into my esophagus so I don't get Gerd.   A pillow behind me makes it difficult for me to roll onto my right side.  A hot water bottle keeps my tummy warm, increasing blood flow and encouraging gut motility (peristalsis).  Those pain pills and antispasmodics seemed to make my intestines go to sleep and not contract like they're supposed to do.  I also increased my magnesium (thiamine needs magnesium to work properly) which also helps with the constipation.

I take a B-Complex in addition to the Allitiamine, Tryptophan and magnesium.  All the eight B vitamins work together and need to be supplemented together.  I also supplement calcium and Vitamin K2, Vitamin D, iron and zinc. All my supplements are available online and over the counter.

I also take B12 sublingual supplements to ensure the B12 gets into my system like @cristiana does.  And like her, I eat small frequent meals of cooked-til-mushy meat and veggies, often soups (because the vitamins cook out into the liquid of the soup). (But no rice).  And I keep a food/mood/poo'd journal in which I also record the time I take my medications and supplements.

I'm including some articles if you would like to read about the solutions I found helpful.  

Remember, this is what works for me.  I'm not a doctor.  Discuss changes to your diet and supplements with your doctor.

I wish you all the best on your journey!  Keep us posted on your progress!

 

"The potential therapeutic effect of melatonin in gastro-esophageal reflux disease"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2821302/

And...

"Regression of gastroesophageal reflux disease symptoms using dietary supplementation with melatonin, vitamins and aminoacids: comparison with omeprazole"

https://pubmed.ncbi.nlm.nih.gov/16948779/

And...

"The Importance of Stomach Acid: Why Antacids Could Make You Sick"

http://www.hormonesmatter.com/importance-stomach-acid-antacids-make-you-sick/

And...

"SIBO, IBS, and Constipation: Unrecognized Thiamine Deficiency?"

https://www.hormonesmatter.com/sibo-ibs-constipation-thiamine-deficiency/

And...

"Melatonin as an organoprotector in the stomach and the pancreas"

https://pubmed.ncbi.nlm.nih.gov/15683461/

And...

"Influence of Tryptophan and Serotonin on Mood and Cognition with a Possible Role of the Gut-Brain Axis"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4728667/

And...

"Role of melatonin in upper gastrointestinal tract"

https://pubmed.ncbi.nlm.nih.gov/18212399/

And...

"Mechanisms of esophageal protection, gastroprotection and ulcer healing by melatonin. implications for the therapeutic use of melatonin in gastroesophageal reflux disease (GERD) and peptic ulcer disease"

https://pubmed.ncbi.nlm.nih.gov/24251671/

😺

  

[Linda Hannibal]

Hi, in response to your continued symptoms. I was diagnosed with Celiac in 2015 and noticed my symptoms decreased when i started the gluten-free diet. I started to eat gluten-free products and my symptoms worsened. I finally did the elimination diet and soy was the culprit. I had bloating, diarrhea and burning stomach feeling. Try to eat whole foods fresh fruit and veggies. I bring my own meals to family gatherings to avoid cross contamination. Good luck

[Scott Adams]

Good point @Linda Hannibal, and welcome to the forum! It's a good idea to keep a food diary to make sure you don't have additional food intolerance issues, as many newly diagnosed celiac often do. Some may be temporary and go away after a year or more on a gluten-free diet, as was the case with several that I had. 

[Lyns5201]

7 hours ago, Linda Hannibal said:

Hi, in response to your continued symptoms. I was diagnosed with Celiac in 2015 and noticed my symptoms decreased when i started the gluten-free diet. I started to eat gluten-free products and my symptoms worsened. I finally did the elimination diet and soy was the culprit. I had bloating, diarrhea and burning stomach feeling. Try to eat whole foods fresh fruit and veggies. I bring my own meals to family gatherings to avoid cross contamination. Good luck

What exactly do you mean by burning feeling ?

[Linda Hannibal]

5 hours ago, Lyns5201 said:

What exactly do you mean by burning feeling ?

Maybe i should have said raw and irritated. I've had an endoscopy and everything looks good. 

[Lyns5201]

4 minutes ago, Linda Hannibal said:

Maybe i should have said raw and irritated. I've had an endoscopy and everything looks good. 

I ask because I also have this sensation but I’m also newly diagnosed and haven’t been gluten free very long yet honestly... mine also feels like raw and irritated/inflammation. How long did it take for this sensation to improve for you?did they do any biopsies of the stomach when they did an endoscopy ?mine looked good and normal to naked eye but biopsy revealed some cellular level inflammation. 

[Linda Hannibal]

9 minutes ago, Lyns5201 said:

I ask because I also have this sensation but I’m also newly diagnosed and haven’t been gluten free very long yet honestly... mine also feels like raw and irritated/inflammation. How long did it take for this sensation to improve for you?did they do any biopsies of the stomach when they did an endoscopy ?mine looked good and normal to naked eye but biopsy revealed some cellular level inflammation. 

The first biopsy showed Celiacs. I noticed that some of my symptoms started to lessen once i went gluten-free. My stomach still felt raw, irritated and inflamed. Make sure you check all the labels. Not just food check hair products etc... My husband drinks beer he has to brush and gargle so a simple kiss doesn't cross contaminate me. The elimination diet was great my stomach felt better by the next day. But i was already gluten-free and it was the soy that was causing my continued symptoms. I started with stomach upset etc.... i had another endoscopy and it isn't gluten causing my new symptoms.

[Lyns5201]

7 minutes ago, Linda Hannibal said:

The first biopsy showed Celiacs. I noticed that some of my symptoms started to lessen once i went gluten-free. My stomach still felt raw, irritated and inflamed. Make sure you check all the labels. Not just food check hair products etc... My husband drinks beer he has to brush and gargle so a simple kiss doesn't cross contaminate me. The elimination diet was great my stomach felt better by the next day. But i was already gluten-free and it was the soy that was causing my continued symptoms. I started with stomach upset etc.... i had another endoscopy and it isn't gluten causing my new symptoms.

Have they figured out what’s going on with recent endoscopy and what’s causing the newer symptoms ? 

[Lyns5201]

6 minutes ago, Lyns5201 said:

Have they figured out what’s going on with recent endoscopy and what’s causing the newer symptoms ? 

I also noticed soy really burns and irritates my stomach

[Linda Hannibal]

4 minutes ago, Lyns5201 said:

Have they figured out what’s going on with recent endoscopy and what’s causing the newer symptoms ? 

My vitamin D was very low which was causing leg cramps. I started taking D3 and the number after a year was to high which can cause GI issues. I think it is still soy causing me grief. 

[Lyns5201]

Just now, Linda Hannibal said:

My vitamin D was very low which was causing leg cramps. I started taking D3 and the number after a year was to high which can cause GI issues. I think it is still soy causing me grief. 

Has the burning eased up any since gluten free at least and cutting out soy the best you can? Are you looking to make sure your not consuming soy anymore ? By grief do you mean other symptoms then gi symptoms ? 

[Linda Hannibal]

Just now, Lyns5201 said:

Has the burning eased up any since gluten free at least and cutting out soy the best you can? Are you looking to make sure your not consuming soy anymore ? By grief do you mean other symptoms then gi symptoms ? 

Yes to a decrease in the raw feeling once Gluten was removed. My issue was from cross contamination. When you start to feel better going gluten-free is easy. I was exposed to gluten two months ago and i used to tolerate a little soy but not lately. The bloating and diarrhea is a real pain. Good luck