Gluten intollerance?

[Pericello]

I have always had abdominal problems as long as I can remember. As I have grown older (I am nearly 60 now) they seem to have grown progressively worse. Some of my cousins have Celliac, others different formas of IBD such as Crohns. I have been diagnosed with Crohns disease for some 10 years but am currently receiving no treatment as my Crohns is "in remission". Tests show no ulceration etc.

However, I am still experiencing severe bowel symptoms. Bloating, cramps, nausea etc. I have had tests for Celiac a couple of times and both came back negative. A couple of years ago I did have "very mild villious blunting" but further tests, including biopsies, again ruled out Celiac. Yet symptoms persist.

After a series of tests last year, I am currently off all medication and not due to to see the consultant for another 9 months or so. A low residue diet was recommended and this has helped somewhat, but I am experiencing almost daily discomfort, bloating and nausea to a greater or lesser level. Sometimes it makes me feel very run down and low. I can eat a proper meal, other times I have to content myself with the odd waffle, biscuit, slice of toast or maybe some soup with minimal solids. This was brought to a new level recently almost immediately after I consumed a product which made feel me very ill and severely increased my bloating which has lasted for days. It contained the following:

x potato
x sunflower oil
? yeast extract powder
x sugar
? buttermilk
x rice flour
x cocoa powder
x salt
? barley malt extract powder

The items I have marked with an X should not be causing me any problems in theory. Rice and potato are generally no trouble. I note however that barley malt extact powder is marked as a potential allergen as is buttermilk. The nature of the product would suggest it would contain barley malt extract powder in significant amounts so as to emulate "Guiness flavour".

I wasn't sure why malt extract powder might be allergenic, but after doing a little research I find that malt contains gluten. I also found that one might not necessarily have Celliac disease but still have gluten intolerance and that there can be an overlap between Crohns and Celliac as they are both immune system related. Azathioprine, which is an immunosuppressant, did help to reduce symptoms. I have had other issues such as Sarcoidosis which all point to immune system problems.

The other two ingredients I am uncertain of are yeast extract or buttermilk. Of there I note that buttermilk can be allergenic and that this is different from intolerance or allergy to milk.

Some time ago I started keeping a list of foods things that caused me particularly severe symptoms, i.e. ones that would make me ill for several days afterwards. I currently have 6 such items on my list. I know that foods containing paprika extract (E160) cause me problems, but it puzzled me that not all of the items on the list contain this. What I have now noticed is that all of them contain an added starch or flour product such as maize starch, cornflour, malt extract powder, whey powder. Most of them also contain an added milk product such as buttermilk, cheese powder, skimmed milk powder. I therefore begin to wonder whether the combination is a particular irritant. I found that I also get very ill after eating anything containing Stilton cheese. Any connection with buttermilk?

I am also reminded of a time when being low on iron, it was recommended to me to take blackstrap molasses. While this may have been of some benefit, I stopped taking it because sometimes (not consistently always) a tablespoonful would give me stomach cramps leading to bloating for a period of time. My suspicion therefore tends to fall on the malt extract powder, which brings me back to gluten.

I therefore can't help wondering once again, whether a gluten-free diet would be of some benefit? I was told that since Celliac has been ruled out, I need not worry about it too much, so I didn't. However I recently read that I might still be possible to be sensitive to gluten without necessarily testing positive for Celiac?

If it might be of some benfit, where do I start? I understand that its quite an undertaking and costly to maintain a gluten-free diet properly but I figure that since the medical profession appear to have given up on me, perhaps I have nothing to loose by trying and it may prove to be a useful test.

 

[GFinDC]

Hi Pericello,

Welcome to the forum!

Celiac disease is not easy to diagnose.  They have a series of antibody tests they do and then an endoscopy.  But not every person with celiac disease passes the antibody testing.  Some of us don't make IgA type antibodies much at all.  So  the standard IgA antibody tests are useless for those people.  Others may show up on just the DGP IgG tests.   Do you have the tests results for your celiac testing?  It would be interesting to look at the tests they did and the test ranges for interpretation.

The problem foods for celiacs are varied, but the main ones are wheat, rye, and barley.  A small percentage also react to oats.  Some of us also develop reactions to other foods like dairy, soy, nightshades etc.  Often we have problems with dairy lactose at first because of the villi blunting.

A good way to start the gluten-free diet is to eat only home cooked meals made from scratch.  Skip the store bought gluten-free labeled goods like bread, crackers, cookies and such for 6 months or so.  Eat meats, nuts, eggs, veggies and a little fruit.  Avoid sugar and starchy foods.  Eat a simple diet and avoid overly spicy foods.  Don't eat dairy for the first several months.

None of this should add a lot of cost to your food purchases.  It is mostly not buying certain foods instead of adding special foods.

Yes, there are actually more people with NCGS (non-celiac gluten sensitivity) than people with celiac disease.  Some people with Crohn's find the gluten-free diet helpful too.

[Pericello]

GFinDC, thank you for your helpful comment. I think the test was an NHS 'standard' Celiac test which I think is the IgA test. The copy of the consultants report to my GP simply says that "blood tests were unremarkable" which doesn't provide much information.

I'm not quite sure what's involved in the biopsy pathology, but I was told only that it was 'negative' for Celiac.

I tend to find that some types/brands of bread do cause me relatively mild problems after ingestion, but others do not seem to. When they did the Celiac test I was asked to consistently and daily eat bread and wheat products for about 5-6 weeks before. There were some symptoms but nothing seriously discomforting to the point where I had to stop eating bread.

Interesting that you mention a connection with dairy products and soy. I have my suspicions about soy as I think it intensifies my symptoms, but I seem to tolerate milk OK, as in breakfast cereal (cornflakes, wheatabix) and coffee/tea. Hovever, on rare occasions I have had a violent reaction after a breakfast cereal that literally doubles me up but thankfully lasts only a few minutes and then calms down. I also learned today that it is possible to tolerate milk but be allergic to buttermilk.

Perhaps some foods have the effect of raising sensitivity over time, while others provoke an immediate response on an already sensitive digestive system. Maybe there is no exact science here and it depends as much on the individual as the type of disease.

Thank you for ideas on how I might start a gluten-free diet. I generally tend to avoid "ready meals" these days but there is much more I can do to avoid dairy and gluten. I will have to rethink my breakfast as well as the tea and biscuits!

 

[cyclinglady]

Consider the Autoimmune Paleo diet for a few weeks (it is gluten free).  This diet has been around, but researchers wanted to see if it really worked.  So, Scripps affiliated with the University of  San Diego (highly respected), conducted a small study with IBD patients.  In just weeks, they achieved about a 78% remission.  That is amazing.  This is just a small study, but eating gluten free and consuming non-processed foods might help you (it can not hurt you).   Definitely worth researching!  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5647120/

https://autoimmunewellness.com/our-story/

[Pericello]

cyclinglady,

Thanks for the information.

I have never heard of autoimune paleo (AIP) diet before and am doing a bit of reading up on it. I note that the study was "uncontrolled" but interestingly reports significant improvements and concludes that "Randomized controlled trials are warranted.".

Regarding the second link, please forgive my scepticism, but I find statements like "I serve people who are ready for a revolutionary approach on their healing journey." alarming. I take any diet site that promises miracles backed by suitable "life stories" if you only read their book with a pinch of salt. I appreciate you are trying to help but I see reason here for caution. I suspect that most people are not looking for a "revolutionary approach" but a common sense one. Please rest assured however that I have appreciated your feedback.

Reading some of the AIP study, it reminded me of one thing that puzzled me about my tests, which the clinicians couldn't answer. My Calprotectin levels were well above those in the study - 1200 - something that my GP had remarked on as being very high. Yet having undergone an endoscopy, colonoscopy and capsule endoscopy all within the space of a few weeks, I was informed, other than the "very mild villious blunting"  that all was clear - no sign of ulceration or any other indications of any kind. The Crohns was definitely in remission - which led to my being taken off Azathioprine.

Since Calprotectin is an indication of inflammation, from where then came the elevated Calprotectin count? If I am in remission why do I feel so ill?

 

[cyclinglady]

Granted, I rarely post links to websites that sell you anything.  I was just trying to convey that food may have the ability to heal some autoimmune issues.  This site worked with Scripps on this study.   I am not supporting anything else this website offers.  

https://autoimmunewellness.com/aip-medical-study-results/

Obviously more studies are needed (it was incredibly tiny), but the problem is funding a study about food as a treatment.  Even though I have  healed from celiac disease (based on my last endoscopy), I do have Chronic Autoimmune Gastritis and Hashimoto’s.  Who knows what triggers these two autoimmune diseases?  Stress?  Diet? Infection?  I am considering the AIP diet.

Since you did not get the complete celiac panel, what did they think caused your mild villi blunting?  Crohn’s?  (I know they said it was in remission, but it can cause villi blunting too).   Many things can cause villi damage like NSAIDS.  Were those all ruled out?  

https://www.cureceliacdisease.org/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease/

I can share that when I was diagnosed, only my DGP IgA was elevated.  Even when I had a repeat biopsy and my villi had healed (my GI went in very deep and had the latest in scopes), my DGP IgA was still elevated.  We think that my other autoimmune disorders are the cause of this elevation. The symptoms I had been experiencing prior to the repeat biopsies was mostly GERD and gastric pinching so we are confident that my celiac disease is not active.  

I hope you are able to figure it out.  If possible, consider getting the complete celiac panel before you remove gluten from you diet.  

[Pericello]

Yes, I appreciate you were trying to convey the results of the study and I am grateful for that. There was a suggestion that the minor blunting of the villi was likely caused by Crohns, but it was no more than a suggestion.

One of the problems with autoimmune diseases such as Crohns and Sarcoidosis (of which I have been reminded of a couple of times by a medical professional) is that they are chronic in nature. I guess they were kindly trying to adjust my expectations. My wife thinks it is stress related, but my GI problems go back to when I was a toddler, so I am not convinced entirely, although I do believe that stress undoubtedly contributes. Some of my cousins have various GI disorders so I believe that at least a pre-disposition to such problems has been inherited.

I was not aware that NSAIDS can cause blunting. When I had Sarcodosis I did have an extended and initially high dose treatment of Prednisolone. I'm not sure whether Azathioprine is an NSAID, but I was on a relatively low dose of that for around 10 years. Perhaps not surprisingly, neither of those were mentioned as possible causes.

I did a bit of a search, but I don't think I can get a complete Celiac panel in the UK. The NHS only seem to use the IgA test as an indicator. Because of my ongoing and unexplained symptoms I was fortunate to get a full series of camera tests and some biopsies, but in the absence of any visible evidence of inflammation in the GI tract, I was effectively  "dismissed" and my next "monitoring" appointment scheduled a year later. AFAIK I didn't have the IgG test and the Calprotectin test was not repeated. Although NHS patients are given a verbal summary of the results of their test, they are not usually able to obtain a full detailed report of the results. One simply can't obtain one's "notes" from the hospital or GP. One might get some additional insight during discussion by thinking ahead and asking appropriate questions, but inevitably some questions surface later and the next appointment is usually not for several months by which time the opportunity of the moment is gone.

As I had wandered around the supermarket last night, having some shopping to do, I found myself thinking about what I would buy if I was on a gluten-free diet. I have to say I was really struggling. Nearly everything I looked at either had gluten or dairy products. As it happened I ended up buying very little for myself and I realised that if I am to go gluten-free then I am going to have to do some serious planning!

I had to smile at some of the gluten-free products. For example on the shelf I found gluten-free rice cakes. AFAIK rice is gluten free anyway, so what's the difference between the ordnary and the gluten-free version except the hugely increased price?

 

[GFinDC]

Hi Pericello,

It does take some adjustment to get used to the new diet.  Most processed foods are loaded with multiple questionable ingredients like emulsifiers, food colorings, stabilizers, flavor enhancers, etc these days.  Soy is often added and also dairy and wheat or barley malt.  A good rule to follow at the beginning is to not buy any food with more than 3 ingredients.  That simplifies reading ingredient lists.

In the USA foods labeled gluten-free have to contain less than 20 PPM gluten.  So large producers will often have a testing process to verify the gluten-free status.  They don't want to get sued for mislabeling a product as gluten-free.  That testing process can increase prices.  Not all companies do testing though.

Foods like apples, oranges, sweet potatoes, eggs, etc have just one ingredient.  We often refer to those type foods as whole foods here.  Whole foods are generally pretty good for you vs. processed foods.

For some of us it seems like we have stronger reactions to foods after going gluten-free than before.  Once we start healing a reaction may be more noticeable,  Another thing that happens sometimes is problems with gas and pain in the gut.  Gut damage leads to gut bacteria problems and any small amount of sugar can set off gas.  So things like rice may be a problem because of all the starch/carbohydrate.  Carbohydrates convert to sugars in the GI system.  So it can be helpful to avoid them for a while.

Over here it is often helpful to check the manufacturer's web site for the gluten-free status of foods.  Or call their helpline for information.

 

[cyclinglady]

I want to share that my hubby had been gluten free 12 years before my diagnosis.  He went gluten free based on the poor  advice of my allergist and his GP.  He was not tested for celiac disease which was not really in the “radar” of most US physicians 20 years ago.  He struggled the first year, but he realized that gluten did made him sick.  He has been gluten free all these years.  Once I was diagnosed we both realized that he had taken lots of risks and we reacted to all kinds of food additives.  We felt better when we avoided processed foods as much as possible.  While he can consume gluten-free bread, I can not.    Xanthan Gum, which replaces gluten in gluten-free bread, makes me sick.  So, he eats a sandwich, but I do not unless I bake from scratch (I tolerate guar gum).

Long before my celiac disease diagnosis (about 20 years), I was diagnosed with Hashimoto’s Thyroiditis. I had an enlarged thyroid and nodules.    I took thyroid hormone replacement.  When I went Gluten Free, my thyroid went back to a normal size and my nodules went away.  Was it the gluten-free diet?  Did it also calm down my immune system?  I think so.  

If you have some pretty intact villi, you might not need to avoid dairy.  I was off dairy for decades.  Turns out that healing from celiac disease gave me dairy back.  Some intolerances or sensivities never resolve (like garlic or Xanthan Gum for me). Of course, aging and a genetic disposition can make you lactose intolerant like a big chunk of the world’s population.  

Autoimmune does run in families.  We thought for sure that my little niece had celiac disease.  Turns out a pill camera caught Crohn’s at the very end of her small intestine out of reach of both scopes.  She is ever vigilant knowing that she might also develop celiac disease later on.  At least the family knows and can advise their doctors.  I made a detailed family Health chart which her GI loved and made it easier for to justify tests.  Actually, she had four different GIs through the years because that Crohn’s diagnosis was hard to catch!  

My girlfriend also has Crohn’s.  She had surgery 20 years ago, but has been doing well ever since.  She has embraced exercise, a non-processed diet, and meditation.  She has been able to avoid biologic treatments which can improve quality of life, but comes with some serious side effects which must be evaluated.

My GI and primary care physician know that I would prefer alternative treatments instead of using drugs.  Mostly because I react to so many medications (anaphylactic reactions).  Even a NSAID or acetaminophen can cause my throat, tongue and face to sell up (not to mention the body hives).  

So, please consider a gluten-free diet or some altered form of the AIP diet.  It might just ward off severely active Crohn’s or another autoimmune disorder.  Think outside of the box when it comes to food.  You do not need to have cereal in the morning. You can eat veggies with your eggs or fish!  Focus on foods that reduce inflammation (avoid sugar and simple carbs).  Keep a journal.  Everyone is different, so there is not one magic diet for all.  

I hope this helps you.