My nightshade allergy may be celiac.. :-(

[Fasteddy]

Hi all..

This is still all very new to me.. I am from the UK and in the mid 1980's, when the medical world was beginning to grasp the extent of food allergies, the NHS made a decision to not treat food allergies due to a lack of funding. Very short sighted decision as it has probably cost a lot more to treat the serious symptoms of those afflicted than perhaps treating and diagnosing the original allergies.

This has left the UK with a population of medical people that simply do not understand or recognize the symptoms of food allergies, which, long way round to get here, bring this to me and my situation. I am now 59 and after reading (with growing horror) as much as I could over the past couple of days about gluten intolerance, am quite certain I have been suffering from it (big time) all of my life.. In recent months I discovered that I am severely allergic to all nightshade vegetables and have spent the summer testing myself with the most common ones that are usually in my diet (potatoes, chilies, tomatoes etc).

I have been several weeks without nightshades now, but some of the most severe symptoms persist. Last weekend, by chance I happened to be near to an American couple discussing celiac disease and was astonished at how their comments about the symptoms exactly described my own! Anyway, after a chat with them, they suggested that it might be that my nightshade allergy is, in fact, a result of being gluten intolerant as they had both suffered 'secondary' allergies that, once they had been diagnosed as celiacs and stopped ingesting gluten, completely disappeared.

This, unfortunately, has created more heat than light for me and I am more confused than I was before. One thing I am becoming more certain of, I need very much to KNOW if I am gluten intolerant, and soon..! My doctor is, unfortunately, not up to speed regarding allergies and while she is sympathetic, her knowledge and experience is very poor.

Is there anyone from the UK on this forum that can point me in the right direction for a test? If I am gluten intolerant, this is going to be a long and difficult journey, but perhaps one with a good destination. I just need to take the first step, preferably in the right direction..!

 

 

[Scott Adams]

I'm not from the UK, but would like to offer some advice. You may already know this, but you need to keep eating gluten until your tests are completed, and I believe that the first step is a celiac disease blood panel:

Although the UK may not be up to speed on food allergy testing and treatment, celiac disease is an autoimmune disease, and the UK is up to speed on testing for it. Keep in mind that many people with CD don't have any symptoms, yet run the same health risks as those who are symptomatic. 

Discuss your symptoms with your doctor, and perhaps you have family members who have been diagnosed with it? If so, all direct relatives should also be screened for it.

Last, there are home test kits available should your doctor not agree to the tests, for example: https://imaware.health 

 

[Fasteddy]

Hi Scott, thank you for the reply..

Am seeing my doctor tomorrow, have already been discussing my nightshade allergies with her, but she is clearly not in her comfort zone with the idea of allergies. Personally, I do not normally use doctors to diagnose anything, I use them as medicine dispensers and usually I am the one saying what is required. If I want a diagnosis I ask to be referred to a consultant as they tend to be the specialists here.

Have spent much of today going through many of the posts on this forum and the more I read, the more convinced I am that I am on the right track. I have particularly noted the wide range of testing and biopsies everyone seems to be having, and the even wider range of results that follow. I have so much sympathy for the folk that have to grind their way through months or even years of trying to get a proper diagnosis, it is so hard to treat something if you do not know what it is..

My concern right now is that I do not have much faith in the medical profession pointing me in the right direction (a lot of bad previous experience) and I was hoping to be able to at least name a test, or set of tests that would point me the right way. Out of all the tests/biopsies that everyone has had, is there one that tends to show the most reliable result? I am certain to be asked what I want to see a consultant for..

And thank you for the advice Scott, I did very much pick up on continually eating gluten up until my test, although my doc is almost certain to tell me to just stay off gluten as the only treatment. I intend to keep taking it as you suggest but oh, am I looking forward to trying life without it, I hardly dare to hope for a 'normal' life..

As for other members of my family, there are several that exhibit very strong symptoms, but I suspect I will be the first (if it turns out I have a gluten prob, wont be certain until tested) to 'out' this problem, and probably put the cat amongst the pigeons when I tell them..!

[Scott Adams]

Don't take this as official advice, but I have to deal with Kaiser Permanente, which is about as close as it comes in the USA to social medicine (it is a "not-for-profit" health care provider started by Henry Kaiser to provide free health care for his WWII ship building workers). 

In cases where I want to be tested for something I've been know to answer "yes" to all questions surrounding it, until I reach the point where they say that I need to run right away to the emergency room, then I back off and say, wait, what was that last question...oh, I meant no to that one.  

[RMJ]

There are several antibody tests for celiac disease including TTG IgA, TTG IgG, DGP IgA, DGP IgG and sometimes EMA.  Total IgA is run as a control.   TTG = tissue transglutaminase, DGP = deamidated gliadin peptides; IgA and IgG are two classes of antibody; EMA = endomysial antigen which looks for TTG IgA in a different way. The total IgA control is done because if one is very deficient in IgA the specific IgA tests aren’t useful.  If any of the celiac antibody tests are positive a biopsy is recommended.

I think in the UK the NHS starts with just the total IgA and the TTG IgA tests so hopefully your doctor can order those tomorrow.

https://www.coeliac.org.uk/information-and-support/coeliac-disease/getting-diagnosed/blood-tests-and-biospy/

[Fasteddy]

Thanks Scott and RMJ, am feeling a little more confident in which direction to point myself in now.. That link is perfect and tells me that my doc will deal with the first blood test step, hopefully we can do it while socially distancing.. Maybe a drive by blood test..

Have read so many heart rending stories of those suffering from some awful effects of gluten intolerance, thought I would add mine as it is a bit of an unusual one, at least the latest aspect of it.

In 2001 I had spinal surgery to remove 2 discs in my lower spine and had a special set of titanium bolts and rods fixed into the vertebrae with flexible joints to hold everything together. Surgery went well, couple of years later was walking and exercising as normal. 2008 and back pain returned. Any movement was agony, could not walk and struggled to do anything. Docs stuffed me with oxy and every other painkiller available. Fast forward to now and after years of pain, misery and disability (docs were trying to get me into a wheelchair), through a fluke of circumstance an old friend (doctor) saw me and immediately was suspicious that something was wrong with my digestion. She said I looked 10 months pregnant..!

Long story short, turned out nightshade vegetables were inflaming my intestines so much that they were pressing nerves into the titanium hardware in my back.. 2 weeks without nightshades and I could walk again.. After much digging into allergies and talking to anyone who would listen, I have been led to believe that the many other symptoms that remain are likely to be gluten intolerance..

So here I am, soooo relieved to be finally getting somewhere and able to be up and about, but also almost desperate to sort it all out and perhaps, get my life back..

[Glitterandgold]

Hi, I have stumbled upon your post whilst googling celiac symptoms. I'm in the UK, in the North East of England. I have been suffering from GI symptoms for many years. I had some tests a few years ago & was diagnosed as having IBS. I think it is a common diagnosis in the UK when they can't figure you out 🙄. At the end of 2019 things escalated, I was feeling awful. Feeling sick / tummy pains / bloated / toilet issues etc. I was fobbed off for several months until I pushed for a referral to see a consultant, finally got an appointment in March & lockdown happened! I have finally spoken to consultant over the phone & she strongly suspects I have celiac. I'm currently awaiting blood test results amongst others. Looking into gluten intolerance tho I really think I might have it. I often also get a condition called Angular Chillitis (sores around mouth) my reading suggests this may also be due to celiac. I don't have a diagnosis yet but I'm hopeful for the first time in a long time. My advice, Insist on a referral to a consultant at your nearest hospital & get them to do a celiac blood test etc ( you have to eat gluten before having it).

[Fasteddy]

6 hours ago, Glitter&gold said:

Hi, I have stumbled upon your post whilst googling celiac symptoms. I'm in the UK, in the North East of England. I have been suffering from GI symptoms for many years. I had some tests a few years ago & was diagnosed as having IBS. I think it is a common diagnosis in the UK when they can't figure you out 🙄. At the end of 2019 things escalated, I was feeling awful. Feeling sick / tummy pains / bloated / toilet issues etc. I was fobbed off for several months until I pushed for a referral to see a consultant, finally got an appointment in March & lockdown happened! I have finally spoken to consultant over the phone & she strongly suspects I have celiac. I'm currently awaiting blood test results amongst others. Looking into gluten intolerance tho I really think I might have it. I often also get a condition called Angular Chillitis (sores around mouth) my reading suggests this may also be due to celiac. I don't have a diagnosis yet but I'm hopeful for the first time in a long time. My advice, Insist on a referral to a consultant at your nearest hospital & get them to do a celiac blood test etc ( you have to eat gluten before having it).

Hey there.. a fellow limey.. 🙂

Firstly, lots of luck. Really hope you get a proper diagnosis and are able to get to the bottom of it. I thought it was going to be difficult trying to avoid nightshades until I went through my food cupboards and fridge yesterday and put a red sticker on everything with gluten. If I do have a problem with gluten (like you, am pretty sure I have) it is going to be very difficult to avoid it in the future. I am considered to be a fair cook and baker, going to have to relearn all of that and assiduously avoid any processed foods as I simply do not trust food companies, supermarkets, politicians and labeling. A 14 year old kid died yesterday eating popcorn in a cinema. He was ok with popcorn but violently allergic to milk and the cinema had contaminated the popcorn with it.. 

Hope you stick around this forum and let me know how you get on with everything, as a brit you will know how hit and miss the NHS can be. Get the right person in front of you and it can literally save your life, get the wrong one and, well, lets just say I have been there a few times and am not keen to repeat the experience. I live in the very north of Scotland now and so resources are few and far between here. I will speak to my doctor today and try to get her to get the blood test done for me, then if the results are positive my understanding is that it is routine to be then referred to a gastroenterologist. Even if the tests are negative, there are further tests that can be done.  I will repeat something that was told to me by an extremely good consultant many years ago, doctors will take more action if you shout and scream about your condition. Not a shouty type of person myself, but I have found it to be true that the more fuss you make, the more response you get. My doc should be bracing herself right now because I will not stop pushing until I get to the bottom of this one..

I am so glad to find this forum, there is almost nothing in the UK, in fact I could not find anything like this in the UK for humans, but counted 11 forums for dog food allergies here. Sometimes I think I wake up on the wrong planet..

 

[Beverage]

Fasteddy:  I'm not in the UK, but I love your attitude about pursuing this until you get to the bottom of it.  I'm in the US, and because I did not have typical symptoms, it took a lot to finally get diagnosed.  Proud of you not willing to give up!  And keep your sense of humor as much as you can.  You write well, maybe you will start a forum or blog about your experience and help others.

[Fasteddy]

2 minutes ago, Beverage said:

Fasteddy:  I'm not in the UK, but I love your attitude about pursuing this until you get to the bottom of it.  I'm in the US, and because I did not have typical symptoms, it took a lot to finally get diagnosed.  Proud of you not willing to give up!  And keep your sense of humor as much as you can.  You write well, maybe you will start a forum or blog about your experience and help others.

Hey Beverage (Bev for short?)..

Mmm, feeling like a bit of a sellout now.. After my summer of discovery regarding my nightshade allergy, very little input from any medical folk here and a complete lack of info in the UK, I ended up looking around the USA where the situation was completely reversed and there is a huge amount of info/bloggs/forums/institutions on seemingly, every street corner. My assumption is (apologies if wrong), that because in the USA nearly all medical services are paid for, there is always someone waiting to take your money to treat any condition and so allergies are taken more seriously, along with your credit card number..

Only a matter of time before it happens in the UK. But meanwhile, I spent many many hours wading through all the available online stuff re allergies before finding this forum, and I am so glad I did.. This is by far the most sensible, serious and sympathetic site I have come across. Some of the sites I looked at were so whacky and full of bizarre (and expensive) dietary 'cures', to popping a crystal up yer bum and facing stonehenge at sunrise, I almost gave up. This forum is wonderful and I have read hundreds of posts now which has informed and educated me in ways I really had not expected.

Sooo.. After my last post my doc phoned me and turns out she had gone off and done some research about allergies and spoken to a few colleagues about me. After a detailed chat, we agreed the best course of action is to wait a month for my reactions to nightshades to fully calm down. I have had this allergy since I was a small child and my doc has concluded that my body and brain chemistry is unlikely to return to normal after just a couple of weeks (sounds reasonable to me) and so am going to continue to eat gluten until the 2nd week of October, and then if symptoms still persist, I will then stop ingesting gluten for a month and see what happens. If symptoms go away during that month I will then return to eating gluten for at least 6 weeks and then go in for testing.

This is way longer than my patience wants to allow, but I can see the sense in it and at the end of all of that, I will have my doc fully onside and fighting alongside me for a resolution, pushing too early may not get me very far without a lot of kicking and screaming, which I think I will save for the right moment.

Allergies are still very much a black art in the medical world, the worst aspect being that so few doctors recognize the symptoms which results in so many folk going undiagnosed for so long. For myself, over 55 years of unending and varying symptoms, some of which really screwed up periods of my life, and I am still uncertain of what allergies I have and to what extent. But the relief I now feel at removing nightshade vegetables from my diet is such an enormous life-changing universe-jolting experience and I am still mentally reeling from the implications. Physically I am feeling wonderful, mentally so clear now, but it is emotionally that the biggest effect is felt, life finally tastes sweet in way I have never known before. I still have some symptoms , and they still point to gluten, but already am so grateful that I am partly down the road to some sort of recovery and have a game-plan to deal with the potential ciliac condition. 

I have read papers about research that suggests a high percentage of folks suffering severe psychological conditions (often institutionalized), many prison inmates and so many other negatives aspects of suffering souls that all point to food allergies and it has opened up a whole world to me that I had not realized was there (and that I was a part of). For me that world offers up unexpected hope, but has also forced me to see a huge amount of unnecessary pain that so many endure, especially before they are able know what it is that ails them. I am very much aware that a hundred years ago, I would have been lucky to have survived my childhood and doubt my adulthood would had me in a good place. 

Dont give up out there folks, if there is something wrong, and there is a possible solution out there, go for it and dont stop until you get there, or you learn enough to make a reasoned change of direction. Good luck..!

 

 

 

 

 

 

[RMJ]

I’m glad you have a plan, but one month gluten free might not be enough to relieve symptoms, especially if you’re new to the gluten free diet and don’t know all the places that it can hide.  Also, some people find when they go gluten free and then back onto gluten that their symptoms are worse.  If it were me I’d try to get the celiac testing without doing a gluten free trial. 

[Fasteddy]

9 minutes ago, RMJ said:

I’m glad you have a plan, but one month gluten free might not be enough to relieve symptoms, especially if you’re new to the gluten free diet and don’t know all the places that it can hide.  Also, some people find when they go gluten free and then back onto gluten that their symptoms are worse.  If it were me I’d try to get the celiac testing without doing a gluten free trial. 

Thanks RMJ, I agree and it was one of the points that I discussed with my doc.

During that month, I would hope that there is at least a degree of symptom reduction, and that would be all I would be expecting and hoping for. My doc has reasoned that any evidence at all that I am celiac, and she will keep pushing for every test that is available, and repeating tests if need be. I trust this doctor to follow through and because of previous experiences, having a doctor like this on my side is a huge asset.

Can confirm about going back onto a food you are allergic to after a period without it. Having it all the time, I guess, means you are constantly fighting it and the immune system will no doubt find a little equilibrium, plus your own conscious efforts which may be fighting tiredness, depression, taking meds to suppress symptoms etc. When I went without my nightshades in the early summer, then ate a potato, I could not believe how ill I became. Within 12 hours I was crippled with massively magnified symptoms and it took 2 weeks for my body to calm down.

I do hear you RMJ, gonna stick to this plan at the moment but your comments are duly noted and will be acted upon if this plans goes awry..

 

[GFinDC]

Hi Fasteddy,

Welcome to the forum!

A few points that may help.  Celiac disease is not considered an allergy, but it is an (AI) autoimmune condition.  Allergies are mostly IgE immune reactions, while celiac tends towards IgG and IgA immune reactions.  Celiac is associated with other AI conditions like rheumatoid arthritis, Sjogren's Disease, etc.  People with AI conditions can sometimes get more than one AI condition.  There are genes that are associated with celiac.  People with celiac have a higher than usual risk of getting another AI condition.

People with celiac can develop additional food intolerances beyond gluten (wheat, rye, and barley).  The repeated irritation to the gut may be the reason for those additional food intolerances developing.

 Allergies are definitely a serious food problem and can be deadly.  It's very important to know which you are experiencing, allergy or AI reaction.  Allergies (IgE) symptoms can include anaphylaxis (breathing issues) and may cause sudden death.  AI food reactions don't tend to have those immediate life threatening consequences.

Your current doctor doesn't sound very aware of celiac issues to me.  I think it would be a good idea to try and find a specialist in celiac or AI conditions before making any changes to your diet regarding eating gluten.  Going off gluten and back on it for testing is something we try to  discourage people from doing, as the symptoms can be overwhelming on gluten resumption and a full gluten challenge may not be completed.

The bummer is that it is possible to have both an allergy IgE reaction and an AI reaction to foods.  But if you can find out for sure which you are having it could save your life.  The treatment for allergies can be very different than the treatment for AI conditions.

[Fasteddy]

Hi GFinDC..

Thanks for that, I seem to be continually playing catch up with this and as I still do not know what is going on with my health, my mind has a tendency to fire off in all directions until it hits something.. I do have a month before I had agreed to try backing off gluten, and giving myself a few weeks to allow the nightshade allergy to calm down still seems reasonable, and I am calling it an allergy as I simply do know what else to call it right now. Feels like one, looks like one but I hear you, could be a symptom of gene related autoimmune reaction but at the moment, I really do not know..

Treating it, or just calling it an allergy has become a bit of a habit as anything else would involve very lengthy (and possibly incorrect) explanations to friends and family and I still would not actually know. As an allergy I can reasonably expect to avoid the food substance, and reasonably expect most folk to understand that I will react badly to it and it will make me ill.

Also have a few friends that are gluten intolerant, and the word allergy seems to be adopted across the board as a blanket term here, has me wondering if it is brit thing..

But you guys do have me rethinking how to approach the gluten testing. Am more inclined to at least do the blood test first, see if anything shows.. Will definitely put more thought into what to do next as the next few weeks allow my body to calm down, it is still noticeably doing that every day I go without nightshades and I am still ingesting gluten every day. I still have 'brain fog' and the feeling of dislocation, even though it is vastly improved now, but I would not be surprised to find myself grasping at ideas through that fog in an effort to try and make the world make more sense, after years of doing just that, it is probably as much habit as a result of a more complex medical condition.. Looks like I will having another chat with my doc in a week or two..

[M. Martha]

Just a heads up re to my diagnosis for what it’s worth. My sister was flagged in December 2016 with elevated antibodies after experiencing bloating and going to her doctor who tested her. She was 68 - we’d both eaten gluten all of our lives but remembered our grandmother being “allergic to wheat.” As a near relative (and also because of a 10 year journey with undiagnosed problems), I went to my internist who didn’t want to do the antibody test but said an endoscopy was the gold standard so referred me to a gastroenterologist. Good thing he did. The antibody test the gastroenterologist did came back negative (I hadn’t been eating much gluten because it was making me sick but I was also trying to heal my digestion from recurrent clostridium difficile and a fecal transplant). He did do the endoscopy, however, which showed depressed microvilli, indicative of celiac. He also thought this could be from SIBO (small intestinal bacterial overgrowth) so offered genetic testing. He tested 2 genes: one was negative for celiac and one was positive. At this point I had already discontinued gluten and what had amazed me was that after two weeks, an oppression which I would describe as a “lack of motivation for living” lifted off of me. At that point I was doing the specific carbohydrate diet (SCD) to try to heal my gut. Gluten is not on it. I did end up having SIBO, took rifaximin and it has not recurred. A year after this, I tested the celiac diagnosis when my grandson wanted me to make cinnamon rolls. We also made biscuits with homemade lard from a pig they’d raised. I ate the cinnamon rolls and biscuits for 3 days without stomach problems. At the end of 3 days, the oppression came back. I was a believer. I have not touched gluten since. I’ve done a lot of webinars and one scientist said, we need to stop thinking of celiac as a disease only of the digestive system and recognize that it’s also one of the brain. While I didn’t have antibodies for celiac, I did have antibodies attacking my thyroid - Hashimoto’s thyroiditis - and they went from 533 to 44 after I cut out gluten and healed my gut. I have since cut out dairy (casein issue), nightshades (muscle soreness), sugar, and processed foods (a majority of the time). I transitioned to almost 100% organic, increased vegetables and eat grass fed beef/organic chicken. I did get COVID 19 in July and it hit my digestion with bloating, nausea and a lot of burning in my esophagus so I’m trying to get my stomach onboard now. All of this is to say that it’s a process. Both of my parents who didn’t share the same genes developed and died from dementia at 87 and 95, which tells me there are environmental factors at play both in the greater environment but more importantly, in the choices we make. Whatever reduces inflammation in the body is a good choice to make whether a doctor is able to make a definitive diagnosis or not. Happy for your success with the nightshades. Be blessed and be well. 

[GFinDC]

18 hours ago, Fasteddy said:

Hi GFinDC..

Thanks for that, I seem to be continually playing catch up with this and as I still do not know what is going on with my health, my mind has a tendency to fire off in all directions until it hits something.. I do have a month before I had agreed to try backing off gluten, and giving myself a few weeks to allow the nightshade allergy to calm down still seems reasonable, and I am calling it an allergy as I simply do know what else to call it right now. Feels like one, looks like one but I hear you, could be a symptom of gene related autoimmune reaction but at the moment, I really do not know..

Treating it, or just calling it an allergy has become a bit of a habit as anything else would involve very lengthy (and possibly incorrect) explanations to friends and family and I still would not actually know. As an allergy I can reasonably expect to avoid the food substance, and reasonably expect most folk to understand that I will react badly to it and it will make me ill.

Also have a few friends that are gluten intolerant, and the word allergy seems to be adopted across the board as a blanket term here, has me wondering if it is brit thing..

But you guys do have me rethinking how to approach the gluten testing. Am more inclined to at least do the blood test first, see if anything shows.. Will definitely put more thought into what to do next as the next few weeks allow my body to calm down, it is still noticeably doing that every day I go without nightshades and I am still ingesting gluten every day. I still have 'brain fog' and the feeling of dislocation, even though it is vastly improved now, but I would not be surprised to find myself grasping at ideas through that fog in an effort to try and make the world make more sense, after years of doing just that, it is probably as much habit as a result of a more complex medical condition.. Looks like I will having another chat with my doc in a week or two..

That's fine and it's good you understand there is a difference Fasteddy.  Allergies are certainly easier for most people to understand than AI conditions.  I think you are on the right track by hopefully getting gliaden antibodies tested before going gluten-free.    They (doctors) sometimes only do the ttg IgA test, but there are several more antibody tests.  DGP IgA, DGP IgG total serum IgA, and EMA are part of the complete celiac antibody test panel.  It would be good to get all of those antibodies tested if you can so you have a reference/starting point to compare with later.  Some people only show positive on one type of antibody.  But it only takes one type of antibody to cause damage.  Antibodies are aggressive little buggers!

[Fasteddy]

Well I have had the results of my first blood test, negative.. Wish I could tell you more but was too busy picking myself up off the floor.. Have requested a copy of the test from my doc but it is not normal for them to hand them out in this country..

That was quite a shock as have been eating quite a bit of gluten, also feeling like hammered crap too, and I have convinced myself I have celiac as the checklist of symptoms read like an autobiography of my life going back to when I was a toddler..

But then things got a little weird.. My doc starts telling me I have an elevated white cell count and then rattles off some numbers all of which indicate a fatty liver.. "Perhaps you could cut down your drinking?" she asked.. "I don't drink" was my reply.. "but my understanding of celiac disease is that symptoms of a fatty liver are common".

This morning has left both myself and my doc scratching our heads in collective confusion. She has gone off to do more research and I am stopping eating gluten for 6 weeks (my choice and decision) and then having the blood tests again to see if it affects any of the numbers in this last test. I do understand that going off gluten, then back onto it (if I have to repeat the test for celiac) can cause a more severe reaction, but I really have to know where this is all pointing to.

I am still convinced I am having a gluten problem, and a big one at that. Whether it is celiac, allergy (which I understand is quite rare) or intolerance I do not know, but I have such a long list of symptoms that persist even after a couple of months now of staying away from nightshade veggies, and the symptoms read like a dictionary definition of celiac.

So.. 6 weeks without gluten. This is going to be hard, especially as I have to also cut out nightshades. Was at my food store this morning asking about polenta and corn flour, might as well have asked to eat their pets such was the bewildering and incredulous responses I was getting.. So I ended up with a couple of boxes of corn-starch and a mountain of beans.. Suspect I will be making a major contribution to global warming over the next 6 weeks.. 😵

 

 

 

[cyclinglady]

2 hours ago, Fasteddy said:

Well I have had the results of my first blood test, negative.. Wish I could tell you more but was too busy picking myself up off the floor.. Have requested a copy of the test from my doc but it is not normal for them to hand them out in this country..

That was quite a shock as have been eating quite a bit of gluten, also feeling like hammered crap too, and I have convinced myself I have celiac as the checklist of symptoms read like an autobiography of my life going back to when I was a toddler..

But then things got a little weird.. My doc starts telling me I have an elevated white cell count and then rattles off some numbers all of which indicate a fatty liver.. "Perhaps you could cut down your drinking?" she asked.. "I don't drink" was my reply.. "but my understanding of celiac disease is that symptoms of a fatty liver are common".

This morning has left both myself and my doc scratching our heads in collective confusion. She has gone off to do more research and I am stopping eating gluten for 6 weeks (my choice and decision) and then having the blood tests again to see if it affects any of the numbers in this last test. I do understand that going off gluten, then back onto it (if I have to repeat the test for celiac) can cause a more severe reaction, but I really have to know where this is all pointing to.

I am still convinced I am having a gluten problem, and a big one at that. Whether it is celiac, allergy (which I understand is quite rare) or intolerance I do not know, but I have such a long list of symptoms that persist even after a couple of months now of staying away from nightshade veggies, and the symptoms read like a dictionary definition of celiac.

So.. 6 weeks without gluten. This is going to be hard, especially as I have to also cut out nightshades. Was at my food store this morning asking about polenta and corn flour, might as well have asked to eat their pets such was the bewildering and incredulous responses I was getting.. So I ended up with a couple of boxes of corn-starch and a mountain of beans.. Suspect I will be making a major contribution to global warming over the next 6 weeks.. 😵

 

 

 

My ballerina little niece had a fatty liver.  She gave up soft drinks (soda pop) and cut back in all the sweets she consumed.  The next year, her liver was normal.  She does not drink alcohol.  Look to how much sugars (whether natural or processed like corn syrup) you are consuming.  Research this topic.  
 

Some celiacs are seronegative (about 10%).  Others like me test negative to the commonly used screening TTG tests. 

On 9/10/2020 at 8:01 AM, M. Martha said:

Just a heads up re to my diagnosis for what it’s worth. My sister was flagged in December 2016 with elevated antibodies after experiencing bloating and going to her doctor who tested her. She was 68 - we’d both eaten gluten all of our lives but remembered our grandmother being “allergic to wheat.” As a near relative (and also because of a 10 year journey with undiagnosed problems), I went to my internist who didn’t want to do the antibody test but said an endoscopy was the gold standard so referred me to a gastroenterologist. Good thing he did. The antibody test the gastroenterologist did came back negative (I hadn’t been eating much gluten because it was making me sick but I was also trying to heal my digestion from recurrent clostridium difficile and a fecal transplant). He did do the endoscopy, however, which showed depressed microvilli, indicative of celiac. He also thought this could be from SIBO (small intestinal bacterial overgrowth) so offered genetic testing. He tested 2 genes: one was negative for celiac and one was positive. At this point I had already discontinued gluten and what had amazed me was that after two weeks, an oppression which I would describe as a “lack of motivation for living” lifted off of me. At that point I was doing the specific carbohydrate diet (SCD) to try to heal my gut. Gluten is not on it. I did end up having SIBO, took rifaximin and it has not recurred. A year after this, I tested the celiac diagnosis when my grandson wanted me to make cinnamon rolls. We also made biscuits with homemade lard from a pig they’d raised. I ate the cinnamon rolls and biscuits for 3 days without stomach problems. At the end of 3 days, the oppression came back. I was a believer. I have not touched gluten since. I’ve done a lot of webinars and one scientist said, we need to stop thinking of celiac as a disease only of the digestive system and recognize that it’s also one of the brain. While I didn’t have antibodies for celiac, I did have antibodies attacking my thyroid - Hashimoto’s thyroiditis - and they went from 533 to 44 after I cut out gluten and healed my gut. I have since cut out dairy (casein issue), nightshades (muscle soreness), sugar, and processed foods (a majority of the time). I transitioned to almost 100% organic, increased vegetables and eat grass fed beef/organic chicken. I did get COVID 19 in July and it hit my digestion with bloating, nausea and a lot of burning in my esophagus so I’m trying to get my stomach onboard now. All of this is to say that it’s a process. Both of my parents who didn’t share the same genes developed and died from dementia at 87 and 95, which tells me there are environmental factors at play both in the greater environment but more importantly, in the choices we make. Whatever reduces inflammation in the body is a good choice to make whether a doctor is able to make a definitive diagnosis or not. Happy for your success with the nightshades. Be blessed and be well. 

Thanks for sharing!  I am glad you are recovering from COVID 19.  😊

[Scott Adams]

Just out of curiosity, do you have your actual blood test results? I ask because my brother went through this. His doctor told him that "you don't have celiac disease and can eat gluten without concern," but a few months later started having serious issues. I asked him to show me the results and when we looked at them his antibodies were indeed elevated, but just below the cut off line where they call it celiac disease. In other words, his body was indeed experiencing the autoimmune trigger caused by gluten, yet the doctor basically ignored this with him and didn't share his results until he asked for them. 

In any case, even those who are gluten sensitive and fit into the category described above should not eat gluten. My brother, like me, also happens to be positive for both DQ2 and DQ8 celiac makers, one of each which we inherited from each parent.

PS - Here are some articles on liver issues and celiac disease:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/liver-disease-and-celiac-disease/ 

[Fasteddy]

1 hour ago, cyclinglady said:

My ballerina little niece had a fatty liver.  She gave up soft drinks (soda pop) and cut back in all the sweets she consumed.  The next year, her liver was normal.  She does not drink alcohol.  Look to how much sugars (whether natural or processed like corn syrup) you are consuming.  Research this topic.  
 

Some celiacs are seronegative (about 10%).  Others like me test negative to the commonly used screening TTG tests. 

Thanks for sharing!  I am glad you are recovering from COVID 19.  😊

Wow.. Looks like I am still taking the first baby steps on this journey, yours sounds like it taken you on a slow boat to China and back.. Well done for getting through covid, celiac is bad enough without this virus..

Not sure it is my sugar levels, I dont eat any processed food, I am fairly restrained with baking cakes and cookies plus my son demolishes anything I make before it leaves the cooling rack.. and corn syrup does not exist here, or the supermarkets are hiding it with the polenta somewhere.

But I do hear what you are saying and having read so many posts on this forum where folk have encountered loads of false negatives/positives and it even though the biopsy appears more reliable, even that looks like it can miss sometimes. I have so much been looking forward to dropping gluten, pretty much for the first time in my life, and 6 weeks of that should at least convince myself of where I stand with gluten, just a matter of formalizing that if it looks like I have a problem with it.

Surprise, my doc has emailed me my results, although I should say singular, 'result';

TgA t-TG antibody <0.2

Looks like I just got the one test although I was hoping for what I think you guys call a full panel of tests..

 

[Fasteddy]

Hey Scott..

Thanks for that, I had waded through some of those articles and in particular the one named 'Abnormal Liver Function Tests in Celiac Disease Often Normalize with a Gluten-Free Diet' which is kind of what I am aiming for over the next 6 weeks.. I will repeat the blood tests then and see if the numbers change.

You can see above the result of my singular test which shows well below any significant threshhold. But am starting to get a bit envious of the system you have over there in relation to testing, looks like you get quite a throrough going over and it includes gene testing.. The NHS here have to have quite compelling evidence for extensive testing, especially when it has been starved of funds for ten years, and then have a pandemic to deal with.. Really am hoping for some sort of physiological changes by going gluten free for 6 weeks, is 6 weeks enough? Just plucked that number out of the air as it seemed a reasonable period of time to notice some changes, that was about the amount of time it took to rid myself of the nightshade symptoms.

I suspect my brother (who lives some distance away in Sweden) has a similar problem. If fact, I have a huge family (father was one of 14, mother was one of 9) and I have quite a few relatives that suffer some of these symptoms, 2 aunts and 4 cousins in addition to my brother are all waiting to see what I discover about myself regarding gluten.

Before I forget, I home educate my son and last year while doing some chemistry, we made some soap. Handed some out to friends and have had an enormous response from all sorts of folk with skin problems, many report a huge improvement to their conditions and my DHC has really benefitted from using my own soap, I make it quite regularly now. Can highly recommend making your own soap, dead simple and no nasty chemicals, just pure glycerin with some essential oils and it has made my DHC so much more bearable. Local young lad here has completely cleared his psoriasis using my soap, am teaching him how to make it this weekend. Most soap here (not sure of USA) cant be labelled as soap as it does not contain glycerin (more profitable to sell it as a food sweetener), often has formaldahyde and/or toluenes (detergents) instead, very harsh on your skin..

Not trying to promote my soap (would be $200 delivery from here) but I do recommend making your own and am happy send anyone my recipe and method if they want to try, especially to possibly help with DHC..

[Scott Adams]

Feel free to post the recipe in our recipe area...not a perfect fit, but close enough:

https://www.celiac.com/forums/forum/27-gluten-free-recipes-cooking-tips/ 

[GFinDC]

On 9/24/2020 at 2:53 PM, Fasteddy said:

Hey Scott..

Thanks for that, I had waded through some of those articles and in particular the one named 'Abnormal Liver Function Tests in Celiac Disease Often Normalize with a Gluten-Free Diet' which is kind of what I am aiming for over the next 6 weeks.. I will repeat the blood tests then and see if the numbers change.

You can see above the result of my singular test which shows well below any significant threshhold. But am starting to get a bit envious of the system you have over there in relation to testing, looks like you get quite a throrough going over and it includes gene testing.. The NHS here have to have quite compelling evidence for extensive testing, especially when it has been starved of funds for ten years, and then have a pandemic to deal with.. Really am hoping for some sort of physiological changes by going gluten free for 6 weeks, is 6 weeks enough? Just plucked that number out of the air as it seemed a reasonable period of time to notice some changes, that was about the amount of time it took to rid myself of the nightshade symptoms.

I suspect my brother (who lives some distance away in Sweden) has a similar problem. If fact, I have a huge family (father was one of 14, mother was one of 9) and I have quite a few relatives that suffer some of these symptoms, 2 aunts and 4 cousins in addition to my brother are all waiting to see what I discover about myself regarding gluten.

Before I forget, I home educate my son and last year while doing some chemistry, we made some soap. Handed some out to friends and have had an enormous response from all sorts of folk with skin problems, many report a huge improvement to their conditions and my DHC has really benefitted from using my own soap, I make it quite regularly now. Can highly recommend making your own soap, dead simple and no nasty chemicals, just pure glycerin with some essential oils and it has made my DHC so much more bearable. Local young lad here has completely cleared his psoriasis using my soap, am teaching him how to make it this weekend. Most soap here (not sure of USA) cant be labelled as soap as it does not contain glycerin (more profitable to sell it as a food sweetener), often has formaldahyde and/or toluenes (detergents) instead, very harsh on your skin..

Not trying to promote my soap (would be $200 delivery from here) but I do recommend making your own and am happy send anyone my recipe and method if they want to try, especially to possibly help with DHC..

Hi Fasteddy,

I am curious what DHC means?  If it means what we call (DH) dermatitis herpetiformis then that changes your celiac diagnosis process.  DH is a skin rash that is only found in people with celiac disease.  So if you have DH, you have celiac disease.  The testing for DH can be different than regular celiac testing.

Liver values being high can be caused by cell apopsis.  That's when cells in the body die.  As in when antibodies destroy the villi lining the small intestine in celiac patients.

[M. Martha]

On 9/24/2020 at 1:05 PM, Scott Adams said:

Just out of curiosity, do you have your actual blood test results? I ask because my brother went through this. His doctor told him that "you don't have celiac disease and can eat gluten without concern," but a few months later started having serious issues. I asked him to show me the results and when we looked at them his antibodies were indeed elevated, but just below the cut off line where they call it celiac disease. In other words, his body was indeed experiencing the autoimmune trigger caused by gluten, yet the doctor basically ignored this with him and didn't share his results until he asked for them. 

In any case, even those who are gluten sensitive and fit into the category described above should not eat gluten. My brother, like me, also happens to be positive for both DQ2 and DQ8 celiac makers, one of each which we inherited from each parent.

PS - Here are some articles on liver issues and celiac disease:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/liver-disease-and-celiac-disease/ 

 

On 9/24/2020 at 1:05 PM, Scott Adams said:

Just out of curiosity, do you have your actual blood test results? I ask because my brother went through this. His doctor told him that "you don't have celiac disease and can eat gluten without concern," but a few months later started having serious issues. I asked him to show me the results and when we looked at them his antibodies were indeed elevated, but just below the cut off line where they call it celiac disease. In other words, his body was indeed experiencing the autoimmune trigger caused by gluten, yet the doctor basically ignored this with him and didn't share his results until he asked for them. 

In any case, even those who are gluten sensitive and fit into the category described above should not eat gluten. My brother, like me, also happens to be positive for both DQ2 and DQ8 celiac makers, one of each which we inherited from each parent.

PS - Here are some articles on liver issues and celiac disease:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/liver-disease-and-celiac-disease/ 

No I don’t have the test but I could probably get it. I’m sure it wasn’t a comprehensive panel, however, which negated its validity in my mind. At the end of the day, I just wanted to feel better....I was convinced twice: after the initial 2 weeks on the specific carbohydrate diet when the “lack of motivation for living” lifted - that really felt like a miracle. You have no idea the emotional and spiritual work I had done to get that off. All of that had its reward but just couldn’t resolve that issue. Then I made a few changes to what I was eating and it went away - mind blown! The following year when I tested it with the cinnamon rolls for 3 days and the oppression came back on, I was convinced. Diagnosis made and confirmed. No more gluten.

I can definitely relate to your brother’s story. Glad you were there to help him sort it out. Would have loved to have known that I had Hashimoto’s when I hovered right beneath the magic TSH requirement. As it was it had gone down slightly after busting through that ceiling so the GP saw no need to refer me to an endocrinologist. I didn’t need her referral, however, and the endocrinologist was fabulous - hands down, the most humble and kind doctor I have ever been to. At the end of the exam which included an ultrasound of my thyroid gland indicating damage, she said, “Congratulations on diagnosing yourself.” That still makes me laugh, but it was music to my ears. Be well everyone and be blessed. 

[M. Martha]

On 9/24/2020 at 10:50 AM, cyclinglady said:

My ballerina little niece had a fatty liver.  She gave up soft drinks (soda pop) and cut back in all the sweets she consumed.  The next year, her liver was normal.  She does not drink alcohol.  Look to how much sugars (whether natural or processed like corn syrup) you are consuming.  Research this topic.  
 

Some celiacs are seronegative (about 10%).  Others like me test negative to the commonly used screening TTG tests. 

Thanks for sharing!  I am glad you are recovering from COVID 19.  😊

 

On 9/24/2020 at 10:50 AM, cyclinglady said:

My ballerina little niece had a fatty liver.  She gave up soft drinks (soda pop) and cut back in all the sweets she consumed.  The next year, her liver was normal.  She does not drink alcohol.  Look to how much sugars (whether natural or processed like corn syrup) you are consuming.  Research this topic.  
 

Some celiacs are seronegative (about 10%).  Others like me test negative to the commonly used screening TTG tests. 

Thanks for sharing!  I am glad you are recovering from COVID 19.  😊

 

On 9/24/2020 at 10:50 AM, cyclinglady said:

My ballerina little niece had a fatty liver.  She gave up soft drinks (soda pop) and cut back in all the sweets she consumed.  The next year, her liver was normal.  She does not drink alcohol.  Look to how much sugars (whether natural or processed like corn syrup) you are consuming.  Research this topic.  
 

Some celiacs are seronegative (about 10%).  Others like me test negative to the commonly used screening TTG tests. 

Thanks for sharing!  I am glad you are recovering from COVID 19.  😊

Thanks! It was very, very weird....have never had anything like it. Threw every immune support protocol I had at it.