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Accepting My Ibs Diagnosis, Odd Symptoms That Don't "fit" Anywhere

31 posts in this topic

It is not worth it to try to sort out in detail. It is true there is a difference between most highly processed wheat flour, and the regular "old" flour. Then there are wheat varieties, some with more gluten than others. There are also factors other than gliadin, but gliadin is the only one they test antigens for.


If you have been having a celiac reaction, that is, small intestine damage due to gluten, for a year, then your gut is likely a mess and you could be cross reacting to dairy, soy, and a number of other things.


Gluten will cause the antibody reaction, whether in large or small amounts. You can't really tell at this point from testing foods, because often the very food that is causing the problem will be the only one that will settle your stomach. I did this for years, using crackers, bread, and dairy, or cookies, at times eating nothing else at all, because anything else would upset my gut. Now that I am gluten free completely, I am having the bad reaction others mention (you get worse before you get better) with my gut. In fact, thank you so much CDinDC for posting that list, I need to get probiotics and do some of those other things.


But mentally, being off the gluten has turned my life completely around. it's like I've had a brain transplant. I feel like I've had ADD all my life and suddenly someone has put me on Ritalin. I can THINK clearly for the first time ever.


I completely understand where you are at with not wanting to go gluten free until you know for sure, and with wondering if you will be motivated to stick to it without a positive diagnosis. I was there a couple of weeks ago myself.  But listen up, like Gemini says, pay attention here:


1. Yes, going 100% gluten free is a big deal. You have to go over your whole kitchen with a fine tooth comb, throw out a bunch of stuff, buy a bunch of stuff, completely change your eating ways and deal with your gut complaining that it isn't getting what it is addicted to. You have to figure out how to deal with restaurants, family holidays, and you pretty much need to have something to give you the spine to stand up to these people. I completely understand. You want that absolute diagnosis from the authority in charge, so you can say, "the doctor diagnosed me with the serious disease, I am not just going with a gluten free fad because it's the cool thing these days." 


Well if the doctor won't even give you the necessary tests to get to that diagnosis, you need to do whatever you can to get to that point in your own mind. My blood test was negative also, but I had been largely gluten-free for months, so I had to make a decision about the endoscopy. In my case, my doctor was willing to refer me to a GI to get it done if I wanted. (I decided not to.) But if I did and if I did not like that GI, I am free to go to ANY GI in the U.S. I choose until I find one that will do my endoscopy. Worst case, my insurance won't pay and I'll have to pay out of pocket, but that is not likely. If I find a GI who agrees I need it, my insurance will pay. So money becomes not an issue, but if you are in a different situation, money might be an issue, but don't fall into the mindset that just because the "system" won't "let" me get the right tests (meaning they won't pay for it) does not mean I'm not free to go get it some other way, even if I have to travel and pay for it out of pocket.


So you need to understand that the ultimate authority in this is YOU, not the doctor. YOU can decide you need to go gluten free, based on the information you have pulled together. How much information and of what sort is for you to sort out. You may or may not be able to fund privately this or that investigation into your own health, but do what you can.


You can always return to the doctors and "re"-complain. Something most people don't understand about doctors is that they have levels of response to a certain complaint, and they escalate the levels at each visit. You have complaint A, doctors have response x, y and z. First they tell you x and you are to go away. If you never come back they assume x fixed you. If you come back they try y. Rinse and repeat. Sometimes you need to return four or five times with the SAME complaint before the doctor will get around to the test or treatment you really need. So it may be worth going back to that doctor and insisting you have upper GI symptoms and want to see what is going on in there, if it is really important for you to get the biopsy result. But you risk it being negative and then you will be back in the same boat without a definite answer.


But you need to be sure to research and understand the biopsy and villous atrophy situation. The biopsy looks for COMPLETE destruction of the villi. If the atrophy is only partial, and/or you do not contain the right autoimmune cells, they can give you a negative or inconclusive result, but you could still be suffering damage from gluten.


Statistically, we are finding out that gluten caused damage is very widespread. If you have the genetic markers, it is highly likely gluten is damaging you, no matter what the results of the endoscopy and blood tests are. I was in your boat exactly a couple weeks ago. You can read my first post, how confused I was. A lot of focused thinking and research, gaining information on this subject will bring you answers.


2. Fearing you will not be motivated to stick to a gluten free diet without a firm diagnosis. I worried about that too. It turns out that it is not an issue at all. The reason is this: right now you are looking at all of this through a fogged mind. If you go 100% gluten free and if gluten is your problem, then it will become like you took off glasses smeared with vaseline and put on clear clean ones. You will see so clearly that gluten free is the answer that you will be flooded with motivation to spare. You will also have more physical energy to proceed with what you need to accomplish. If this does not happen to you, then maybe you are not celiac/gluten sensitive, and need to push for more answers.


I so completely understand the need for an official authoritative answer, not the diagnosis of celiac/villous atrophy itself, but the authoritative command that I "should" go completely gluten-free. Which at first I thought DID require the official celiac/villous atrophy diagnosis.  I wanted that so badly that I went to a holistic doctor back when my regular doctor told me 100% gluten free was NOT necessary. It turns out she was being wise, because I had yet to be tested, But I didn't know that, I thought she was being equivocal about me maybe being celiac. Looking back she should have drawn blood right then but at that point in time I was already feeling so much better just getting off the sugar roller coaster she thought that might have been all I needed to fix me. But my rashes, etc. continued getting worse and so I went back but I digress...


The holistic doctor said, just based on my symptoms, "Of course you have gluten enteropathy. Go 100% gluten-free, that is a given. On to other things...."


Then he tested me for billions of other things, probably all consequences of celiac, but all stuff I don't necessarily need to know right now. It's too much coming at me. Such as exactly what bad bugs are in my gut, how screwed up are my hormones, and so on. It happens that didn't satisfy me, not that I didn't believe him, but at heart I guess I am kind of a "by the rule" person and need to hear it from the conventional medical system, as screwed up as it is. I got the idea everyone who walks into the holistic doctor clinic gets a gluten diagnosis and so it was not terribly credible, although I believe he was correct.


Alternative medicine is another option, if you are driven to it by the lack of care from regular medicine. I don't know what holistic medicine is like in Canada. Here, the guy knew his stuff and was very up to speed with gluten sensitivity. But he wanted me to do all kinds of colonics and things that maybe would help (I don't know anything about them) but I simply cannot manage those things right now. I don't know if they are scientifically proven, I don't have the time, I don't have the money, and I just want to see what going gluten-free can do for me first, so I hesitate to mention alternative medicine, you have to beware and not be sucked into a belief system that may or may not be credible.


But I am putting out options, just to illustrate that you are in the driver's seat and you have pathways to explore. And realize that going back to the doctor is one of them, he needs to go to the next level with you, and if he doesn't after you go back and say you're still sick and still don't have answers, I would almost say he is committing malpractice NOT to give you an endoscopy. Just because you have lower gut findings does not prove the absence of upper gut problems.


For me, I went back to my regular doctor and, now she used "y" and did the blood test which by then was too late, I had sero converted, if it had ever been positive, but when I gave her my HLA-DQ2 result and she looked back at my history, that convinced her I need to be completely gluten-free. For me, it was the authoritative command I needed to motivate me. For me the biggest issue is not my own motivation, but my needing ammunition to talk to my family. My siblings and my children, and even my mother, all have symptoms of gluten issues, but it is hard to slap these people awake. So I talked frankly and openly with my doctor. "What can I say to my family, are you telling me that I have a definite diagnosis that I can use to tell them they have a first degree family member with Celiac Disease?" Her answer was "yes". Officially, on paper, my diagnosis is "celiac or NCGS" because neither has been proven or disproven. But for me I don't need anything more, because the treatment is identical - a completely gluten free diet. And I have the blessing of my doctor to tell my family they have a sister/mother/daughter seriously ill because of gluten and they really need to look into their own health via gluten-related disorders.


Sorry this is so long but I'm hoping my own journey will make you feel less alone. My solutions might not be your solutions, but I'm hoping to help shed a little more light for you. All the responses you've gotten in this thread are great. These people know what they are talking about.


The blood tests, yes, there are ALL kinds of "celiac panels" and the doctors have a dozen they can pick and choose from, of varying cost. I don't know how the system works in Canada, are doctors penalized for expensive testing? Are they rewarded for low cost per patient? Do they track that kind of thing in the system? I don't know but if they do then I would be doubly suspicious that you are only getting minimal care. It might be that you must return and "re"-complain more often to get to the same level of care that you'd get from an average doctor in the U.S. who is not yet tangled in a system that tracks "cost efficiency" per patient. But you can go online to LabCorp or whatever testing lab and look up the various celiac panels they have.  For that matter, you can get the gene test through a lab through your doctor if he will order it. The fact that doctors so seldom order it tells me that many of them are just not yet aware of how widespread non-classic celiac presentation is.


Understand, any doctor who completed medical school before 2003 and possibly for many years after, probably thinks of celiac in terms of a growth-retarded child with diarrhea and malnutrition. If you are outside that box, God help you. At least in the U.S., and I suspect Canada also still grossly under-estimates its celiac population. For example, it is known that celiac is associated with type I diabetes. Any child who gets type I should immediately be tested for celiac. I doubt this is happening, but it should.


Thank you so much for typing up the reply. You have put together what I have been feeling so well. Most of the frustration comes from the fact that it would be difficult to tell a layperson, and family members that the diet needs to be taken seriously without a doctor's note saying so. My mom (who has no autoimmune issues) thinks eating bread is fantastic for the body, and nobody in their right mind should avoid it. To give you an example, my mom did not listen to me when I told her that the bread I normally ate was giving me stabbing pains whenever I had it for breakfast. When the GI doctor completed my celiac blood test and told me to avoid dairy, wheat, etc. was when she made a conscious effort to not include it in my diet (for e.g. everyone would eat roti, but she was ok with me eating rice). Now that my celiac test is negative, she's pushing me to go back to eating everything normally. Without an official diagnosis, it's so hard to tell her, "mom I know you want the best for me, but I absolutely.cannot. have this!" :( But anyway. Thank you.


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Hi 0range,


You said you weren't sure you could stick to 100% gluten-free.  There is a reason that the gluten-free diet needs to be 100%.  Celiac disease is an autoimmune condition.  NCGI is also autoimmune although a different process.  If you think about the last time you got a cold, how big was the germ that made you sick?  Do you remember seeing it?  My guess is you didn't see it, because it was way too small to see.  How about measles?  Have you had a measles immunization?  If you did you probably haven't come down with measles even though those germs still exist in the environment.


Our immune system protects us from very small amounts of germs and such.  It is pretty darn sensitive to be able to do that job.  Once the immune system learns to kill an invader it doesn't generally let that invader in the body again without a fight.  When it learns that gluten is an invader it reacts to it like it would any invader.  It attacks.  In our case it attacks the gluten in our guts and the villi get caught in the crossfire.  That immune reaction may last for weeks to months, depending on the person.  So even a small amount of gluten can cause problems for quite a while.


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I really appreciate this everyone. Thank you so much for your advice. I will push for an endoscopy before starting the gluten-free diet and if it isn't possible I will start it regardless.


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My dad recently had an endoscopy of his stomach, since he has intestinal metaplasia. Because he does not have a h.Pylori infection doctors are predicting that this may morph into autoimmune atrophic gastritis :( this makes for 3 AI diseases. I think they also looked at his duodenum and according to the reports it looked normal. Not sure if they took any biopsies or how many. I guess my question is this, that even in the absence of celiac disease, can people with AI problems benefit from avoiding gluten in their diets?


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 I guess my question is this, that even in the absence of celiac disease, can people with AI problems benefit from avoiding gluten in their diets?





If I still had my beloved Dad (and given what I know now?) he would be on a G F diet this very minute!!.

Since I can recall, even as a babe, he had several GI issues and drank Maalox like it was water (ulcers, h.pylori, acid reflux, mysterious intestinal bleeds and chronic anemia requiring dozens of blood transfusions for 8 years...) he had renal failure in the end, but there is no question it was all from long UNdiagnosed celiac. And I was following the same path of the slow death until I made it stop.


shall I go on? no need, right? :) 


Honey, and your Dad need to be G F ...IMHO


and yes, have the endoscopy with biopsy..and no matter what, please, just  try the G F diet.


We tell you the truth, based on our own experiences and long medical histories. No doctor "gets this".


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We tell you the truth, based on our own experiences and long medical histories. No doctor "gets this".

my doc refers people to here.............  true story.  i was a little shocked, but then again not really.   <_<   


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    • So, LST my celiac sibling thinks I should see a naturopath to get additional food sensitivity tests. I think this is swell, but expensive for me. He had a panel done and was reacting to some foods he ate the most of. I have reached out to a local allergist and they do food testing but do not accept my insurance. I was going to make some more calls tomorrow. I actually do have mild reactive airway disease too which seems to go hand-in-hand with the allergists. I honestly had no idea, but makes since. What type of tests have folks had? I know I am not allergic to most foods as of November. My former GI doc ran a basic panel then but it seemed short. Has anyone had any luck with these? I read there is a difference between IGE and IGG tests. Anyone get a doc to order them and insurance to cover? I may end up having to save up for awhile to have this done with a naturopath. But I was off of payroll recently with all of this and the idea of waiting for a couple of more months to find out what other foods may be trigging me really sucks. I am off of dairy and soy, suspicious of lettuce and shrimp.
    • How about reaching out to your local celiac disease support group?
    • Yes, I am in Houston, TX. Can anyone recommend a good GI in Houston, lots of experience with celiac?  
    • I am sorry to hear about your mother.   It is not so hard to get a medical doctor to order a celiac panel -- especially if your father was diagnosed with celiac disease.  Our family GP did not blink an eye when I first asked my daughter to be tested.    If you think your doctor will disregard your legitimate request, you can either fire him or put the request in writing and send it certified (attorneys love documentation!)  I agree that our doctors should support us.  I have a great GI, but my GP  is pretty clueless when it comes to celiac disease, but she admits it.    She does always order all the lab tests I request.  Perhaps it is because I come in with supporting medical documentation and evidence.  If she was not supportive to my satisfaction, I would find a new doctor.   Again, you can go gluten free in your own.   Chance are you have celiac disease.    But it is hard.  Really hard if you do not have the support of your family.  That is my concern.   Are you in the US?  
    • I've just read SO MUCH about the long, arduous process of getting a positive diagnosis through traditional medicine - I'm not sure I want to put myself through all that. Since my father WAS positively diagnosed - I carry the celiac gene and another gene that predisposes me to gluten sensitivity - and my fecal tests for gliadin were SO elevated - there are enough reasons for me to go to a gluten free diet. The true medical diagnosis would just make it easier for my family/friends to believe the necessity of it. My children are adults and not particularly health care nuts. I doubt they would take their own risk seriously without a medical diagnosis. I'm afraid my husband, while he is trying to be supportive at this point, will grow weary of all the things I no longer serve at meals and all the places we will no longer go to because there are not gluten free alternatives on the menu. A medical diagnosis would make it easier for him, long term, I think.  I don't have much faith in general in our western health care system. My mother died 6 months ago at age 82 after 4-5 years of many different health issues. She had given up the keys to her car in her late 70's after getting lost several times. I became her designated driver to all doctor appointments, procedures, hospital stays, etc. The incompetence and disregard I saw blew me away. I'm surprised any elderly people survive our health care system once they get on that revolving door. The reason I started seeing a naturopath is that I am looking for an alternative to medical doctors for most of my health issues as I age. I know there are some things I still have to see them for - and of course, they are essential in trauma and emergency situations. But I am on a quest to follow a more holistic approach to my health care. If this is the path I am choosing, then I have to follow my gut (no pun intended) in situations like this. I think the only reason I would go through the medical testing would be for other people - not me. It seems to me, that with so many people being gluten intolerant these days, a decent M.D. would listen to a patient that was adamant about their intent to live gluten free - positive celiac diagnosis or not (and especially with the gene and stool test results). I mean, they don't tell vegetarians they have to eat meat ... and vegetarianism is a personal choice. Sorry if I seem to be rambling ... this is all so new, and I'm trying to find my way.    
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