Gluten/Dairy Intolerance testing?-Worth it? Possible?

Lactose intolerance is actually a normal state. The ability to digest milk is a modern adaptation due to agriculture, after infancy. STILL, 75% of the World's population can't digest milk (Lipski). Testing for Celiacs is a good idea, however if you come back negative, it still does not necessarily mean that you are "fine" eating gluten--yet you might be told it is in your head. I don't necessarily agree. There are less acute immune responses that happen--which are not true "allergies", but can still cause problems. There are "alternative" tests that still have an error rate. Lactose intolerance (and taking in dairy still) or any food that is allergic, can cause digestive upset, wearing down the villi to name a few, and increase intestinal permeability. This may cause increased sensitivities to foods that would not normally be an issue if your digestion was healthy. A strict food elimination can offer a lot of valuable information.

Is this the same as "leaky gut syndrome"?  I just finished reading a lengthy article on leaky gut, and those words I bolded out in your post were used extensively throughout this article.  This sounds exactly like what I've been experiencing for the past year and a half.   Would an endoscopy provide a more conclusive diagnosis?  Sorry for the slight hijack!

Yes- this is basically the "same". An endoscopy can show damage to the villi etc, but I doubt it would be considered highly "unusual" unless you have had major damage. It can also rule out other conditions & can take a biopsy if it is indicated. A specific test called the mannitol and lactulose test is for intestinal permeability.There is a lot more that encompasses digestive health, and could include an elimination diet to sort out foods that are problematic & supplementing with probiotics to "reseed" healthy flora. If you would like to read a more comprehensive overview on digestive health, I would recommend Digestive Wellness by Elizabeth Lipski, Ph.D.

I would talk to your doctor and see what (s)he recommends.
It is VERY likely that it is not all in your head. I hear a lot of people dianosed with Celiac say they (or their family) thought that for a long time. And some people's families STILL think it's all in their head even after a diagnosis - my grandmother was this way. Different thread

Regarding your first sentence: Celiac is one of those diseases where everyone can have different symptoms - and the symptoms can change over time. It can range from the most common (digestive issues) to skin irritations (which I get too), head fog, sinus issues, joint issues, hair loss, depression... the list goes on forever. SECONDLY, not everyone develops Celiac as a child. My mother was diagnosed at 40 years old, and my sister was diagnosed at 31 years old. In fact, probably more than half of the people I know with Celiac were diagnosed as adults. It's VERY common. So just because they didn't figure it out when you were a kid that has absolutly nothing to do with a current diagnoses. Nothing. And I wouldn't rule out that there is "NO WAY" you could have something serious. Like I said everyone'e symptoms are different. In fact, my symptoms CHANGED from when I was diagnosed as a kid to now as an adult. They are completely different.

As to your questions, YES there is a huge benefit to being tested for Celiac. 1) you will feel better (mentally and physically) if you are diagnosed and know exactly what you should stay away from. 2) You and your family will know it's not all in your head. 3) Most importantly, your risk for long term damage will decrease if you are dedicated to eating a gluten free diet.

YES it is possible to test correctly for Celiac. There are two different kinds of tests. the blood test where the look for the antibody. This is hit and miss from what I understand - it really does not mean a whole lot. The gold standard in Celiac testing is the small bowel biopsy. This will definitively tell you if you have Celiac. The TRICK though to the small bowel biopsy test is that you HAVE to eat gluten for days/weeks before you are tested. Otherwise the test could result in a false negative (maybe that's what you've heard about). Basically your intestines have to be damaged by gluten for the results to show up in the test. Sucks to be sick for a week, but I'd think the peace of mind would be worth it.

Just to piggy-back on what lisac was explaining...Celiac's Disease isn't something that is automatically active since birth.  It basically has a trigger.  A person who has the genetic markings is at risk of having the active disease triggered.  Once the switch is activated, there is no cure...that is, once the person with CD has had the switch tripped, the only remedy that will keep this person healthy is a gluten-free diet.  Period.

Like lisac said, the sad fact is a lot of people live in denial.  It's a lot more simple to label a person with irritable bowel disease or inflammatory bowel, etc.  Even more sad is that people with CD that don't eliminate gluten from their diet are much more likely to develop intestinal cancers. 

Now, you might be asking, "What flips the switch to activate the disease?"  The answer, I have read, is a stressor to the body.  It could be an infection/sickness or emotional trauma.  It can be switched on at any age.  My son was 5 when he, my then 3 y.o. daughter, and wife all came down with rotavirus.  At first of course, they just tell you it's only diarrhea, etc.  After persisting for over a month with no let-up, the doctors did every test on blood and poop you can think of...except for the one that would have helped the most...the Celiac panel.  What's crazy, is that I still remember driving to the pediatric gastroenerologist thinking there was nothing they could do about it (btw, this was 4 months in, and my wife and daughter had long since gotten better when my son hadn't).  Boy was I surprised when we got the official diagnosis of celiac's disease (okay, technically we couldn't say 100% certain because we did not have the small bowel biopsy).

Even ped. gastroenterologists make mistakes.  The initial recommendation they made to have the biopsy made no sense.  He had rotavirus for months on end (of COURSE his small intestine's lining was going to look like a warzone!)  so I asked if they could differentiate rotavirus damage from CD damage and of course, "Um, no." 

He's gone gluten-free and everything is sooo much better.

If you even suspect you may have CD, don't immediately go gluten-free.  You will screw up the testing.  They will be testing your body for an overreaction to gluten. 

btw, there are lots of folks out there with Celiacs:  actress Neve Campbell, The View's Elisabeth Hasselbeck, and MSNBC's Keith Olbermann (so yes, it affects conservatives and liberals alike!  )

Wow ... here I have been wondering what triggered mine ... it was one of two things: there was one horrendous year during which my Mom was killed in a car crash, I had a hysterectomy, and my stepdaughter, who was doing drugs and living on the street, came to live with us ... it was horrid ... that's when I developed fibromyalgia, but it might actually (upon reflection) have been related more to celiac. I did improve with some medication to help me sleep (a sleep study revealed I do not get to Stage D of sleep, so my shut-eye is not restful). I also improved because I went low-carb which did reduce the amount of gluten I consumed (not consciously at that time). Then about 5 years ago I had a bad food poisoning infection which lasted for weeks. That's when I developed a dairy allergy -- not just intolerance, I throw up -- so I'm thinking that was the second kicker. I've been taking Pariet for five years now ... and REALLY want off it. If I don't take it, I can hardly eat anything. I'm seeing the doctor on Wednesday, and continuing to consume gluten for the moment. Great advice ... thanks so much!!

Glad to hear you'll be seeing a doc on Wednesday. 
If the doc does mention Celiac's Disease, just remember that Celiac's is different from "allergies" or "intolerance."  It's an autoimmune condition in which your body views part of itself as foreign and subsequently attacks itself.  The small intestine lining is the primary enemy, but like lisac mentioned earlier, Celiac's can manifest the attack on the body in many ways.  In children, it can mess with how tooth enamel is created causing abnormalities and weak spots that create problems down the road.  In adults, the higher rates of arthritis and intestinal cancers are the facts I'm certain I've read about.
It can't hurt to ask about a celiacs panel (blood testing)...so, for now keep eating all that gluten!  Breads, pastas, cereals, etc.  Enjoy!

"Enjoy" ... lol ... even though it makes me feel rotten! Hehe ... my grandfather died from stomach cancer ... I wonder if that could have been related ... I did a small test with some wee donuts ... bad bad very very bad ... sigh ... I have several cousins with it also and suspect there may be some hereditary tendency. On the Paleo diet, I do quite well, but on the Blood type diet, which suggests grains for me, I did very poorly. It's all starting to add up ... thanks!!

I would encourage you to get tested. But even if it comes back negative, and you feel better eating gluten free, stick with it!
My Mother-in-law and Sister-in-law have both been diagnosed with Celiac Disease. My mother-in-law was told she had it after the birth of her first child at age 16. But no one advised her about what it was or how she should change her diet. It wasn't until she was having SEVERE sinus issues at age 40, that she had to BEG her doctor to test her for celiac. He didn't believe she had it because she didn't appear to be any of the "common" symptoms! He finally ran the blood test and did the biopsy and sure enough her vili was TRASHED! She has now been gluten free for about 5 years and it doing great (although there was some permanent bone and liver damage due to eating gluten for so many years).
Once she was diagnosed, my sister in law when in and got tested as well. She had suffered from many, many ailments over the years, but was never correctly diagnosed. She is a gluten free now, and doing well (but she also has SEVERE osteoporosis from eaten gluten in the past, she is only 35).
When my daughter was 3 years old, she had diarrhea daily, and complained of headaches and stomach aches. Because of the celiac in the family I immediately took her off gluten for 2 weeks. By the end of the 2 weeks, she was completely better. We then added gluten back into her diet for 2 days and she was sick again. She has been gluten free ever since (she is 5 now). Even though she has never been 'officially' diagnosed, it is obvious that her body cannot handle the gluten. Her doctor is still skeptical because she has never had "growth" issues. But for many, the damage is still being done on the 'inside' even if there are not a bunch of 'outside' symptoms
I would encourage to to educate yourself about gluten intolerance and Celiac Disease. It might seem discouraging at first, but over time you will find out it is not as inconvenient as you think.
Even though my youngest daughter is the only one who cannot have gluten, our entire house is gluten free. My husband was skeptical at first, but through trial and error we now enjoy everything we ate before, only gluten free! I finally mastered his favorite "molten chocolate cake" with gluten free flours! Yummy!
Sorry this ended up so long. I hope it helps. Good luck on your journey to better health!

I've been eating Primal since end of September and strict Paleo last 4 weeks. It was hard to give up dairy and grains I gave up few months ago.

I feel so much better and my husband has noticed even bigger changes giving up those foods. He has a pretty strong response to corn.

Have you tried doing Paleo and seeing if your symptoms improve or go away?

Lots of folks I know doing Paleo  have seen unexpected health improvements in things they never considered diet related.

I do know folks that dabble in Primal/Paleo diet that knowing that have Celiac's is helpful to them staying strong and being very strict following the plan.

Good luck!

 

OK so my doctor is very supportive, and I've had one blood test for Celiac, and am awaiting an appointment with the GI specialist. In Canada, this can take months, so while I kept eating gluten before the blood test, I've cut it out now ... and I can't believe how much better I feel. I have more energy ... less phlegm (this is important to a singer!) ... I sleep less and wake refreshed ... and most amazingly: I get hungry. I NEVER got hungry before. I can't believe how starving I am ... and how much flatter my tummy is getting. Amazing. I SHOULD get hungry, especially when I burn 2000 extra calories in a day through workouts ... KathyG ... what is "Primal?" Paleo I know ...

Actually, in Ontario, it only took a couple of weeks for me to get in to the GI specialist and another couple of weeks for the scope and biopsy for celiac. Maybe the long wait is only in BC - that's your trade off for living in a prettier province!

lol @ ptri ... it's 14 and sunny here, my crocus and daffodils and tulips are up, and the cherry blossoms are phenomenal. Personally, since I'm not in dire straits, I will wait as long as necessary for the gastroscopy!!! LOL!!! Been there, done that, it's NOT ladylike!! I think I'm still combing drool out of my hair, haha ... my family is all Back East and they are envious of our amazing non-winter. We had snow for three hours on December 18. That's it. But you're right ... BC is really bad for waiting. It took me a year and a half to get knee surgery ... by which time it had repaired itself ... but I digress from Gluten Issues ... soooooory!

Yup...I'd take the cherry blossoms over quicker medical turnaround any day. We've had no snow until yesterday, but that just makes the city grey and depressing. Sorry - I too have led the discussion away from gluten.So - about gluten and testing: I've been eating paleo for about two months, and find that I'm living moderately pain free. Gluten seems to trigger my IBS - no celiac, according to the results from the biopsy, thank a variety of deities. I'm glad that I have a base line from the scope and the biopsy, though, but it sounds like in the States, this kind of testing can lead to insurance increases if the results are positive. I've heard that there are over the counter celiac tests, but I don't know if they're accurate.

IF you get tested, you may turn up negative for Celiac. TONS of people have problems with leaky gut that won't test positive for Celiac's. Many, many, MANY will notice some difference if they go gluten-free. The best way to improve your health over the course of time is to tinker with yourself. YOUR results are all that matters. If you have tried Paleo and it made you feel better, WHY doubt it or wonder why it works? Rejoice and celebrate! Trust me, I do the same as you so I am not judging...just trying to nudge you a bit into trusting your body to tell you what is right for you.
Visit The Paleo Diet blog, and start reading all the Q&As. They are so informative. There is also a section on the site to read Dr. Cordain's published research.
Dairy: some people are more sensitive to it than others. I do ok with dairy but if I want to lose weight quickly and feel super-healthy, I dump it.
Grains: zero for me. I recently started making sure that my "splurge" foods (which are 10-20% of my diet to avoid burnout), are also gluten-free, which usually means my splurge is ice cream or chocolate. I have noticed a good improvement in how I feel, enough so that I am determined to keep it up and don't feel any desire to cheat with gluten. I have no notion that I have any chronic gut issues and I have no other chronic health problems, yet I NOTICE A DIFFERENCE in going gluten free, so I imagine that you, with chronic health issues, would certainly notice a difference! Keep it up!

All I have to add is NEVER underestimate the power of stress. Seriously. A few years back I had the $hits all the time and I finally went into the docs to try to figure it out. They DID find a lactose intolerance verified by the breath test, but even with cutting out all dairy my symptoms did not go away. They did every test known to man you can do...blood tests, some weird xray test where I had to swallow some stuff and they watched it transit, endoscopy, colonoscopy...all of it.In the end they found nothing. I am now convinced that it was stress. It started at a time in my life when things were going downhill fast. Right before the worst of the downhill slide I had the $hits constantly. Within days of going on antidepressants and work removing the major stressors I had my first normal crap in months.Stress does crazy things to your body and if your weakest link happens to be your GI system that is where the symptoms are likely to show themselves. If they eliminate everything else medical...look to stress.

Just because no one has yet, I'd like to point out the difference between lactose intolerance and casein intolerance.  Lactose intolerance is the inability to digest the milk SUGAR, and as some have pointed out, many/most adults suffer from this to some degree.  Products are available (such as Lactaid) to assist in the digestion of lactose.  There are also dairy products that are made "lactose free."  This does mean dairy free.  Casein intolerance is an inability to digest the PROTEIN in milk and in short, there is nothing you can do except avoid milk.  In both cases, a reaction can be immediate and severe, or low-grade over a period of days. 

A gluten-free, casein-free diet (ok, 95%, sometimes you just want pizza...) has really helped my Crohn's disease and IBS.  It's not a cure-all, but gluten and casein are the two hardest proteins to digest and the diet has found support for improving afflictions from autism to schizophrenia.  I lost about ten pounds, have a lot more energy, and get many fewer migraines.  If you want to try an elimination diet, many of the resources i used recommended at least three months away from gluten and at least one month dairy-free before doing a challenge. That said, I have trouble digesting a lot of other things too which makes my nutrition during training a bit challenging.  I also have to avoid residue/fiber, alcohol, fats, and caffeine. Check out the Gluten Free Forum for lots more info...

I'm new to the site and tris in general... but gut stuff I know.  Twelve years in the trenches.  I think I'll go comment on the thread about colonoscopies now...

Cheers!

Excellent post! Great job on clearing up your Crohn's! I dumped the dairy again recently and just use heavy whipping cream and butter (grass-fed) as both of those have very minimal casein and no lactose. If you used ghee, there would be no casein.

Whipping cream has minimal casein and no lactose?????? How could I have not known this!!! *Adds whipping cream to list of tolerable substances, grinning wildly*  

My celiac test came back negative; no surprise. But my doctor is great. He says, "it's a guideline, not a rule. Clearly there is an issue with wheat." But it may not be gluten. Since I've been gluten-free since my test, I'm now cautiously adding things back in to see what I react to. Oddly enough, mashed potatoes bother me but baked and fries (blush) do not. I don't use any dairy in my mashed potatoes ... except butter, which I can tolerate. And cashews are totally out (ow) ... an oatmeal muffin was NOT a good idea ... What other tests are there that can help me identify my issue? Would a naturopath help? 

Some people are more sensitive to casein and lactose than others, so you may not be able to tolerate heavy cream. If you try organic and it causes problems, try grass-fed from Whole Foods and see if that affects you any differently. It does make a difference for some people if they have grain sensitivities to try dairy from grass-fed rather than grain-fed cows.