Still not feeling normal.

[briandjoyce]

I have celiac, just found out and have been off gluten for 2 months. My stomach rumbles all the time, when I lay down im not comfortable and it can feel like its hard to breath. When I have an emty stomach I dont feel hungry just nauseous and sick until I eat. Is there a chance I will never feel 100% again? This sucks. 

[ch88]

Normally it does not take more than 2 months for somebodies digestive symptoms to go away on a 100% gluten free diet. It may not be Celiac related or you may be getting cross contaminated. 

 I am not a doctor so none of this is medical advice. However there is information online about H. pylori and stomach acid levels which may be relevant. 

Having difficulty breathing and pain in that region could also be something more serious than heart burn. 

[ch88]

Also lots of people on this forum have other food sensitivities. An elimination diet could be helpful but would require time for the stomach to adjust. That way you could tell better if a particular food is problematic. 

[briandjoyce]

Oh and I cant sleep past 6AM. Sometimes im up around 4 or 5 but never past 6. I don't know why! Does anyone else have any of these issues? Normally i sleep until at least 9 but not since having all the issues. 

[cyclinglady]

In theory, the small intestine can heal in just a few weeks.  But the reality is that most celiacs take months or a year or so to heal.  Why?  Celiac disease is an autoimmune disorder like lupus or MS.  It is different in that the trigger is known — gluten.  No one knows what triggers other autoimmune issues.  But once triggered, the body builds up antibodies.  Eventually the body decides to calm down, but that could takes weeks or months.  Another reason is the gluten free diet.  The learning curve to it is really steep.  Mistakes are so common!  

Please read the Newbie 101 thread located under the “Coping” section for some valuable tips.  

Finally, it is going to take time to heal.  If you avoid eating out and stick to a unprocessed foods diet, your healing might be expediated.  

I wish you well. 

 

[GFinDC]

Hi Brandi,

Lots of people on the forum have had sleep issues relating to celiac disease.  You can search for insomnia and find threads about it.

Celiac damage can cause mal-absorption of nutrients.  When our bodies don't have enough minerals and vitamins things can get pretty wonky.  Some us of even get grouchy.  Poor sleep may be related to that.  Hopefully those sleep symptoms will resolve in time as your gut heals and begins absorbing nutrients better.

B vitamins and magnesium are often suggested as possible helps for sleep issues.  The B vitamins can help nerves work better and magnesium helps our muscles relax.  Another possible help is vitamin D.

It can help your recovery if you avoid all sugar and dairy.  Dairy can have a tendency to keep people awake.  Sugar and carby foods (white rice, white potatoes etc) can cause bacteria overgrowth and gas.

I hope you feel better soon!

[ch88]

Celiac disease can cause other autoimmune disorders and health problems. Often the symptoms will improve or go away when someone removes gluten from their diet. People don't necessary know why this happens but there may be a number of different reasons for this. It can also be a slow process in some cases. 

Some people with other types of autoimmune disorders besides celiac disease can have other food sensitivities besides gltuen. 

On this forum it seems to me that if someone has a metal or neurological issue with gluten the chances are they also have other hidden food sensitivities besides gluten. Two diets that I would consider are the AIP diet and the Frasano diet. The AIP diet has shown to be successful in treating IBS and some other autoimmune conditions in small trials. The fasano diet is based on eliminating cross contamination. 

Open Original Shared Link

Things like the bodies ph is also partly controlled in the stomach. Taking a teaspoon of baking soda has been shows to reduce inflammation. Apple cider vinger is lower in sodium and has the same effect. It is thought that apple cider vinegar may be helpful for diabetes (also and autoimmune related disorder) probably for the same reason.

Open Original Shared Link

Open Original Shared Link

For me there are other foods that I am sensitive to (alcohol, corn, grain and dairy) and I used to also have trouble not being able to sleep in the morning. I also used to have a high blood sugar level in the mornings. It is fine now, but I think I have to stay with my highly restrictive diet. 

It can take a long time for IGG antibodies to exit the body so any diet needs to be tried for a long period of time without cheating. Doctors aren't very aware of celiac disease and its connection to other autoimmune disorders. The same thing goes for other types of food sensitivities. 

In general celiac disease is thought to be the only autoimmune condition that can be treated through diet. There is starting to be a shift towards recognizing that other foods sensitivities are also important. 

There have been a few studies that have linked headaches to IGG antibodies which in turn are triggered by food. In some studies IBS is linked to mild food allergies (IGE antibodies) and IGG based immune response to food. It takes a while for this information to get to the doctors though. Until the doctors do catch up it would be a good idea for people to educate themselves on these things. 

[Posterboy]

On 10/16/2018 at 4:33 PM, ch88 said:

It takes a while for this information to get to the doctors though. Until the doctors do catch up it would be a good idea for people to educate themselves on these things.

Ch88,

I saw the same research you posted about how the pH turns off the immune response.

It is very fascinating research.

Here is  the article from another source that might  give a little more insight.

https://www.medicalnewstoday.com/articles/321624.php

Strong gastric pH can help protect us I believe from some of the effect of protein's (ie gluten, lactose etc.) from setting off an autoimmune reaction the small intestine.

Here is a thread about how we must defend ourselves against proteins or are body attacks itself.

https://www.celiac.com/forums/topic/121915-the-way-it-really-is/

Also I started a topic about how old forgotten research indicates we might be misdiangosing low stomach acid as NCGS or at least I think  it plausible based on what is known about stomach acid but people didn't seem to notice it much.

https://www.celiac.com/forums/topic/121380-intriguing-old-reserach-detailing-low-and-no-stomach-acid-in-celiacs/

I am glad you brought this research up.

There is even  relatively new research (as research goes) 10 to 12 years old that indicates the same thing.  I will quote the abstract.

https://www.ncbi.nlm.nih.gov/pubmed/16670517

Open Original Shared Link 2006 Jun;6(3):214-9.

The effect of gastric digestion on food allergy.

Open Original Shared Link¹, Open Original Shared Link.

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Abstract

PURPOSE OF REVIEW:

"The role of the stomach as the primary location of protein digestion is very well recognized, leading to classification of proteins as digestion-resistant or digestion-labile. This review analyses the role of gastric digestion in food allergy.

RECENT FINDINGS:

Hindrance of gastric digestion by elevation of the gastric pH, the therapeutic goal of anti-ulcer medication, was recently shown to trigger food allergy via oral sensitization in a murine food allergy model. The relevance in humans was assessed in an observational study of 152 gastroenterological patients who were medicated with anti-ulcer drugs due to dyspeptic disorders. Twenty-five percent of all patients developed a boost or de-novo IgE formation towards regular constituents of the daily diet. The clinical relevance of the induced antibodies was confirmed by positive skin and oral-provocation tests. Moreover, the importance of gastric digestion was also proven for food-allergic patients, as the allergenicity of allergens were reduced up to a 10,000-fold by gastric digestion.

SUMMARY:

These recent studies indicate for the first time the important gate-keeping function of gastric digestion, both in the sensitization and the effector phases of food allergy."

Yet as you note ch88 this is not recognized by doctor's today  . . . . because they can't sell you medicine for low stomach acid but they have medicine for high stomach (PPIs) which in time cause low stomach acid to trigger food allergies if the research is correct that low pH can trigger an auto-immune reaction in our body (organs) and  not just our GI tract IE small intestine where our microvilli trigger our Villi to be attacked mistakenly because proteins went through undigested to the small intestine.

Here is nice research about protein digestibilty and food allergies.

https://www.jacionline.org/article/S0091-6749(08)00772-0/fulltext

I found treating my low stomach acid being diagnosed as high stomach acid helped most of my food problems . . .but my results might not be typical.

I just suggest you research it more.  .. . More and more research is indicating strong stomach acid is our friend and low stomach acid is a viscous cycle hard to escape from especially after you have begun a PPI because it can lock you into hyperacid rebound upon stopping (or trying) to . . the attachment rate is 90+ percent because it is almost impossible to do (stopping) without suffering terrible acid rebound reflux etc.

Here is my story I hope it helps you ch88.

https://www.celiac.com/blogs/entry/2106-is-ncgs-andor-celiac-disease-really-low-stomach-acid-misdiagnosed/

good luck on your continued journey.

This is not medical advise but I hope it is helpful but I think you (ch88) are on the right track.

As you note too bad we as patients have to educate ourselves on these topics.

2 Timothy 2:7 "Consider what I say; and the Lord give thee understanding in all things"

Posterboy by the Grace of God,

[ch88]

Posterboy,

I read the links you posted and some of your other posts on the subject. That is interesting and I agree that stomach acid levels probably play a large role is food sensitivities and celiac disease. Apple cider vinger will raise the ph of the stomach (make it more alkaline), which will stimulate the production of more stomach acid, reduce inflammation and slow down stomach emptying. 

I regularly take drink some water with some added apple cider vinegar. I am not sure if helps with my food sensitivities or not. I don't have digestive problems generally if I avoid certain foods. 

The problem with seeds (also casein and eggs) though is that they are hydrophobic. Gluten can pass through the stomach without being digested. Gliadin in then broken down in the intestine into peptide fragments which trigger celiac disease.

AN-PEP and DPPIV are enzymes that can breakdown gluten in the stomach before most of it can reach the intestine. Both these enzymes are probably harmless and may considerably reduce the effects of accidental cross contamination. Even these enzymes are not totally effective though at breaking down all gluten before it reaches the intestine. 

Open Original Shared Link

 

[Posterboy]

Ch88,

I wouldn't over use apple cider vinegar.

Longer term use of ACV can dry the blood and because it can raise stomach acid thus causing delayed stomach emptying it can lead to worsening of your symptoms.

Open Original Shared Link

It looks like AN-PEP my actually help some celiac's because our stomach acid levels tend to be higher (generalized statement) but we don't really know unless we test.

we eat things our stomach acid pH goes up temporarily and this would be in the sweat spot for AN-PEP to work.

But someone who has normal healthy stomach acid around a pH of 1 to 3 can naturally hydrolyze proteins into harmless peptides.

Open Original Shared Link

Here is a great WHfoods article about digestion.  It is kinda of long but well worth the read.

Open Original Shared Link

digestion is a two step process . . .. without a strong acid to drive the process the "active digestion" phase breaks down and proteins in the small intestines are rightly attacked as invaders.

see this seattle PI article about the cliff notes version of active and passive transport that explains it well.

Open Original Shared Link

I hope this is helpful but it is not medical advice.

search for untersmayr they have done the best work on the topic of proteins, stomach acid and food allergens.

as long as someone's stomach is strong enough approx. 3.0 or lower we naturally degrade proteins into harmless peptides.

Open Original Shared Link

If this pH is not reached then proteins then pass the stomach undigested setting up an allergic reaction in the small intestine.

Ch88 there is an utersmayr article I am missing that I want to quote/cite and can't find it so I apologize for that. . . . but in circa 2008 they did research on protein hydrolysis that said most acids above approx. 3.5 pH won't denature proteins and they go through undigested.

That is why their a 10 thousand percent increase in allergenic reactivity in the small intestine and why AN-PEP would/could help those who's stomach acid is naturally strong enough to digest gluten into peptides.

when we get sick we get gastritis because of our low stomach acid.

see this research "Epidemic gastritis with hypochlorhydria"

Open Original Shared Link

Now for 7 out of 10 us that is no problem.  We get over our illness and get better and our stomach acid again starts cutting up proteins into harmless peptides.

quoting

"Acid secretion returned to near baseline levels in 14 of 17 subjects after a mean of 126 days (range 53--235); severity of gastritis diminished concurrently in 7 of 10 subjects on whom biopsies were serially performed. An infectious etiology is suspected."

for many or some of us anyway this can be triggered by an EBV infcection.

Here is an article on it.

Open Original Shared Link

Here is a good research aritlcle over view on EBV infections in general.

Open Original Shared Link

taking Magnesium can help with an EBV infection see this research on how Magngesium and EBV bond to the same receptor sites in the body and how supplementing with Magnesium helps with chronic fatigue etc.

Open Original Shared Link

I hope this helpful but it is not medical advice.

I wanted to say something about the low nutrient status of celiac but I have run out of time.  I will just post this link/research about appropriate supplements for celiacs entitled

Open Original Shared Link

and say it is is the same nutrients people get low in when we get  (too) low in stomach acid.

I must stop for now. 

I know this has been way too long as usual but I truly hopes you or the next reader some.

As always  “Consider what I say; and the Lord give thee understanding in all things” this included.

2 Timothy 2: 7 

Posterboy by the grace of God,

 

[ch88]

 

Posterboy, (or anyone else who might still be reading this thread.)

A modern american diet is very high in protein from meat, fat and sugar. All of these things are acid producing. Probably most Americans are very far on the acid side. I use vinegar to try to balance out my bodies ph and to kill any bacteria that might be in my stomach.  A lot of people use ACV regularly and I think it is safe if used in moderation.  

I am not sure if I have H. Prioli or not but a lot of people do. Small quantities of ACV (along with eating a less rich diet) is one way to control H. prioli in the stomach.  H. Prioli inhibit acid production in the stomach. 

Vegetarians are less likely to get gout and kidney stones than meat eaters. This is thought to be  in part because most kidney stones are made out of uric acid. More alkaline urine can be useful for dissolving uric acid kidney stones. I don't think eating a rich diet all the time is very healthy. Urine that is to alkaline for long periods of time can cause another type of kidney stone to develop. 

I bought urine PH test strips from walmart and use ACV to help balance out my urine PH a little bit. It still varies a lot based on what I eat though.  

I don't suspect there is anything wrong with the ph in my stomach or my digestion in general. 

Also none of the above is medical advice as I am still not a doctor. 

[Posterboy]

Ch88,

If you think you have H.Pylori you should best tested for it.

Here is the study about non-invasive methods to test.

Open Original Shared Link

I used ACV once. . . .until my my doctor said my "blood was dry".

Just be moderate with it and you should be fine.

Longer term use can effect your potassium levels.

Just so you know . . ..it is not common but possible.

If you want to test your stomach acid yourself baking soda is a nice home test.

see this article.

Open Original Shared Link

body pH is not the same as stomach acid pH.

Ch88 I hope you find something that helps you whatever it is.

for me it (most of my problems) was low stomach.

see this thread about bloating and it helped brandi1969.

https://www.celiac.com/forums/topic/122303-extreme-bloat-help/

she had problems for years that got dramatically better after trying BetaineHCL.

We not all alike. we have different things that help us. . .. I only know it helped me.

Good luck on your continued journey.

***** Again this is not medical advice but I hope it is helpful. 

As always “Consider what I say; and the Lord give thee understanding in all things” this included.

2 Timothy 2:7

Posterboy by the grace of God, 

[sheronlyn]

Cylinglady yes they do know what causes other autoimmune diseases. Gluten sensitivity. Eating gluten if you are sensitive causes a heightened immune reaction  which then attacks proteins in organs, tissues etc that it confuses with the proteins in gluten with the result being autoimmune disease of that particular body system. That is the  base root cause of autoimmune disease no matter what its called. Gluten sensitivity can cause up to 100 autoimmune diseases and up to 200 different disease conditions in all. Celiacs is just one autoimmune condition gluten sensitivity causes so you may not have that but you can have many others. The only true reliable way to know if you are gluten sensitive or gluten sensitive and could become celiac is to do a gene test through Dr Osborne Gluten Free Society Texas USA. Most labs worldwide only do a celiac gene test but you can have gluten sensivity genes but not celiac genes which can lead you to the other 200 hundred health conditions including autoimmune diseases. If anyone wants to truely understand gluten sensitivity google Dr Peter Osborne as he and other practicioners online have a wealth of information for you to educate yourself and take control. One of the most important things,people need to do is not only go gluten, dairy, soy free but grain free too. Dr Osborne explains why.  The next biggest is heal your leaky gut which you will have and a main hinderance of recovery on the elimination of those foods. Doing one without the other is counter productive. If your gut is leaking proteins from undigested food your immune system is always on hyper alert causing chronic inflammation and autoimmunity. 

[healthysquirrel]

On 10/15/2018 at 9:37 PM, briandjoyce said:

I have celiac, just found out and have been off gluten for 2 months. My stomach rumbles all the time, when I lay down im not comfortable and it can feel like its hard to breath. When I have an emty stomach I dont feel hungry just nauseous and sick until I eat. Is there a chance I will never feel 100% again? This sucks. 

Hey there, I am a bit over 3 months in, until about a week and a half ago I was such a mess and on med leave for 2 months. I got way worse post diagnosis since I went off gluten. they sent me for more tests, allergy blood screening, colonoscopy, stool test etc. Still waiting. 

My digestion is MUCH better because I simply stopped eating and drinking anything processed. Those gluten free packaged foods are mostly crap. I thought "oh i will eat this packaged gluten-free food once in a while as a treat because I deserve it" but it was making me so ill. The cramps were awful! (cbd drops helped with my cramping btw)

I was feeling quite blue at 2 months worse than at the beginning somehow, but now even if i still have serious leg/feet issues etc, I feel alive again, something drastically changed in my energy levels too. Yes, rule things out other things medically h-pilori, anemia etc, but what about starting your diet over simply for a bit.

Doctors always say just eat gluten free, but it is not that simple and it is not enough. try eating clean for a few weeks to see if it helps you, if it does, continue, then add other foods in slowly to see what is bothering you.

There will be a moment where you will start seeing the benefits of your new diet without gluten.

Surprising things happen. You have a new life now. Just because lots of people heal fast doesn't mean everyone does. It depends of severity of the atrophy and age and how long you've had it etc.

Soon you will see that you will find new things that interest you. Cooking I hope!

During these past few months, I learned to make vegan kefir, planted about 15 plants in my apartment, I grow my own sprouts. I had to stop brewing beer, but I am learning more about fermenting veggies etc. I've seen a ton of movies. I figured out that riding a bike doesn't hurt my legs like walking does. 

Try to take things one step at a time. Be sure to organise your time to cook foods that make you feel well. I try to always have 2 small meals ready to go at all times, so that I can still be spontaneous.

All my best, hang in there!

[Posterboy]

On 10/15/2018 at 11:06 PM, briandjoyce said:

Oh and I cant sleep past 6AM. Sometimes im up around 4 or 5 but never past 6. I don't know why! Does anyone else have any of these issues? Normally i sleep until at least 9 but not since having all the issues.  

Brandijoyce,

If you have trouble with Insomnia either not going to sleep or having trouble falling back asleep.

Try some Magnesiu Citrate or Magnesium Glycinate it can help your insomnia issues.

Here is the research.

Open Original Shared Link

Here is a nice article on the many ways it can help us sleep better from psychology today.

Open Original Shared Link

I hope this is helpful but it is not medical advice.

2 Timothy 2:7 Consider what I say; and the Lord give thee understanding in all things.

Posterboy by the Grace of God,

 

[Flash1970]

Hi, My first few months after I went off gluten were horrible. I was diagnosed with celiac disease and my doctor just said look on the internet and quit eating gluten. I felt way worse than I ever did when I was eating gluten. I was totally miserable. I kept calling him and he said just stick with it. So I did.  I ate gluten free. I did have processed foods that were gluten free, but I'm a picky eater and they were mostly awful.  So I stuck to whole foods. I still didn't feel real good after 3 months but I was a little better. About month 4 , I woke up one day and thought oh my knee doesn't hurt as bad. I was able to cut down my pain medication. 

Along with the celiac, I had hashimotos thyroid (hypothyroid) and severe anemia. My thyroid was all over the place. I did take iron treatments to resolve the anemia. Since then I have no more anemia. 

The best book I ever read was the wheat belly diet. It's written by a cardiologist and he really explains the effects of gluten on your body. One of the reasons that you feel so bad going off gluten is that your body goes through withdrawals. Similar to opiates. Scary. It has the same effect on your brain and body. Very interesting reading. 

Keep up the good diet. Be very strict and you'll be rewarded by feeling good.