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First, I appreciate all the information people post in here.  I've broken down and decided to put my frustrations into writing.  I've been to 2 doctors and both seem to think I'm nuttier than a fruitcake.  As do other people in general.  Maybe I am.  I'm not one to go to a doctor unless it's bleeding or rotting off.  The best I can discern on all this random sudden collection of 'symptoms' is an allergy.  The problem is that it's 90% of the time not digestive (I am thankful for that).  But everything else seems to fit in the 'everything else' category... tired, a weird tingle/ itch (in unfun places), joint pain, sinus, vision isn't as good, heck even my menstrual cycle is off kilter.  I could watch paint dry and be quite content. What adds to this is that it isn't an immediate reaction, consistent, nor is it debilitating (joints are painful but I can deal).  There's a threshold at which I can 'take it' when I eat gluten.  Diary, I can take cheese (thank goodness!) but enough milk and greek yogurt will put me to sleep or staring at the wall (thinking casein).  Another thing that made me lean this way was that on the 23andme results came back as having 1 marker for celiac (I know it isn't 100%, but an added item to make you think, that's a plausible theory).

I ate gluten free/ low gluten for a few weeks and most of this went away.  For a week now I've gone a few days overboard with dairy and no gluten and gluten no dairy in an effort to zero in on what it is and feel like crap.  It's something.  Do people believe me, not much.  I'm not breaking out in hives or asphyxiating. 

I had a test done on my back and nothing came back as you damn sure are allergic to X.  But I have hence learned that if you haven't had any in a while, it comes back negative. I had gone low/ no gluten for a few weeks and so nothing came back positive.  Milk (not sure the casein or whey balance) came back iffy.  But because it was next to the control, it was considered 'eh'.   PC doc had recent annual blood work done and some extra thrown in, cholesterol, iron, B12, arthritis, diabetes, etc all good.  Allergy doc declared "but you're healthy!"  No s$#&.  Then I'm here because I didn't have anything to do at work?  So am just going to figure this out on my own and then appointment with the big dogs in area.  (i.e. tier 2 tech support, they wouldn't look at it till I sent in allergy results from elsewhere, lol).  The day before, gluten and dairy myself up and see what I get!  Just frustrating that no one seems to believe me - if there are no witnesses, it didn't happen.  Thanks for letting me vent!

Damn my head itches at this moment in time.  Wish I had the ability to concentrate on work lol!  :)

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The test on your back looks for allergies, which are different from celiac disease.  Will your doctors test you for celiac?  If not, in most states in the US you can order your own blood tests - just search on something like “celiac lab tests online.”  The full panel would include IgA and IgG  TTG and DGP tests, although it may be difficult to find all of those.

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You would have to be on gluten (1 to 2 slices per day) for  solid six to 12 weeks in order for ANY celiac test (measures antibodies) to work.  A celiac disease reaction is not the same as an IgE allergy which can be immediate.  It can take time for antibodies to ramp up and get to the blood stream.  

I have celiac disease, but I am not allergic to wheat.  Completely two different things (though you can have both).  

The 23 and me test? About 35% of the population carries the genes that might develop into celiac disease and onlyna tiny few actually develop it.  So, gene testing helps  rule out celiac disease but does not diagnose it.  Too many people carries the genes.  

Edited by cyclinglady

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As said just because you have the genes does not mean you will get it,. But 1 out of 133 Americans do have celiac. There are over 200 known symptoms for celiac and it can manifest in various ways and many go without noticing GI issues and it only shows up as damage via a endoscope with biopsies viewed under a microscope.

But first is the above mentioned celiac blood panel normally a full panel needs to be done and even then some test negative and only show on intestinal biopsies. .
https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

The diary issue is normally lactose intolerance....thus why many find cheese to be a bit easier then full on dairy. The cause is damaged villi, the tips of the villi in your intestines produce the enzymes to break down lactose. Many gain it back later with healing. >.< mean time try dairy free cheeses from like Miyoko, Kite Hill, Spero Foods, Leaf Cusine, Yogurts from Kite Hill, So Delicous, are decent. While for milks I go to Silk or Blue Diamond for the affordable almond, cashew or coconut milks.

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6 hours ago, cyclinglady said:

You would have to be on gluten (1 to 2 slices per day) for  solid six to 12 weeks in order for ANY celiac test (measures antibodies) to work.  A celiac disease reaction is not the same as an IgE allergy which can be immediate.  It can take time for antibodies to ramp up and get to the blood stream.  

I have celiac disease, but I am not allergic to wheat.  Completely two different things (though you can have both).  

The 23 and me test? About 35% of the population carries the genes that might develop into celiac disease and onlyna tiny few actually develop it.  So, gene testing helps  rule out celiac disease but does not diagnose it.  Too many people carries the genes.  

Completely understand that genes arent 100%.  I'm reaching for straws and banging my head on the wall.  However you just blew my mind that you are celiac but not allergic to wheat.  I've read wheat allergy but not celiac never the opposite direction.  

And 6+ weeks for it to show up on a test!  That blows my game plan out of the water.  Ugh.  <Kicks the dirt>  The doc did a celiac test but it only looked at 1 antibody that came back negative.  

Thanks for the info.

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6 hours ago, Ennis_TX said:

As said just because you have the genes does not mean you will get it,. But 1 out of 133 Americans do have celiac. There are over 200 known symptoms for celiac and it can manifest in various ways and many go without noticing GI issues and it only shows up as damage via a endoscope with biopsies viewed under a microscope.

But first is the above mentioned celiac blood panel normally a full panel needs to be done and even then some test negative and only show on intestinal biopsies. .
https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

The diary issue is normally lactose intolerance....thus why many find cheese to be a bit easier then full on dairy. The cause is damaged villi, the tips of the villi in your intestines produce the enzymes to break down lactose. Many gain it back later with healing. >.< mean time try dairy free cheeses from like Miyoko, Kite Hill, Spero Foods, Leaf Cusine, Yogurts from Kite Hill, So Delicous, are decent. While for milks I go to Silk or Blue Diamond for the affordable almond, cashew or coconut milks.

Nice to hear that not everyone has GI issues.  And such a long list of problems.  While it may not be celiac, I think at a minimum my body has decided it just operates better with little gluten and dairy. 

And i have gone to soy milk; almonds are next on my list of things to see if my body revolts list.  My shoulder issue (months old and no idea the source) seemed to feel so much better with all this gunk out of my diet.  Turns out my diet is close to an anti-inflammation diet.

 

Thanks!

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Have they ruled out other autoimmune issues like lupus or rheumatoid arthritis (you mentioned joint pain)?  What about your thyroid?  You can have autoimmune and still have normal labs usually ordered on a physical.  

Edited by cyclinglady

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Nightshades can cause joint pain in some people.  Nightshades are tomatoes, potatoes, peppers, and eggplant.  Soy is a top 8 allergen so not a great thing to add to your diet.  There is so much soy in the foods we eat already that many people react to it.

The antibodies to gliaden (gluten protein) decline if we are not eating gluten.  So the tests for antibodies fail because of that decline.  So a gluten challenge of eating some gluten for 12 weeks is needed to be sure the antibodies are circulating in the blood stream.  The other celiac test is an endoscopy where they take biopsy samples of the small intestine lining.  They look at the samples under a microscope to see if there is villi damage.

 

Edited by GFinDC

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8 hours ago, cyclinglady said:

Have they ruled out other autoimmune issues like lupus or rheumatoid arthritis (you mentioned joint pain)?  What about your thyroid?  You can have autoimmune and still have normal labs usually ordered on a physical.  

Yup.  Lupus, arthritis, diabetes, basic thyroid tests were done in my annual workup.  Doc declared me "healthy".  It's in my head.

For one weekend I ate nothing but protein (chicken, beef, eggs, etc), veggies, and nothing out of a can (other than the hummus I made and spoonfuls of peanut butter so I didn't starve).  No dairy.  Smidge of olive oil for my home made salad dressing from fresh herbs in my sad little garden.  Have switched to decaf coffee.  Come Monday my body felt much better.  Mentally I was shot but physically better.  Shoulder felt better than it had in months.

The soy milk seems to help me out.  Body seems to appreciate the nutritional value over the skim milk it was getting.

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Might start keeping a food diary, and changing to whole foods, so you can easier see what you react to. A detailed report of what you eat and when you have said reactions or feelings can help you find patterns with foods. It will also be useful when showing to a doctor or dietician.
https://www.wikihow.com/Keep-a-Food-Diary

Soy has some adverse effects on hormones for most humans...seemingly less so on people of Asian ancestry. I learned it gave me major gas and distention along with causing causing some other issues.

I personally went paleo to deal with my allergens and autoimmune issues then went keto to help with my blood sugar and ulcerative colitis. I have other food issues as you can see in my signature. Recent found out that I have to limit my nightshade intake along with onions and garlic or my body throws a fit...but moderation is key for me there.

>.< Sometimes I make coconut cream from full fat coconut milk for added fats and nutritional content and use it in coffee or in place of heavy cream in desserts. But my body runs on fats for fuel not carbs (this takes awhile to get your body to switch to)
Bit of a fun fact..your brain is mostly fat and runs best on healthy fats
Most almond and cashew milks are fortified with added vitamins and minerals.

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If you are ready to throw in the towel in terms of seeking a firm diagnosis (at least for a while) and move forward, consider an Autoimmune Paleo Diet (AIP).  This is a temporary diet that allows you to restart and identify food intolerances.  It is gluten free, does not allow any grains in the beginning, nightshades, legumes, eggs,  dairy etc.  It basically involves veggies, fish and meat.  (All suggestions given by the wise members who have already shared this advice with you.) As you progress, you can add foods slowly back in while noting your symptoms, if any.   

There has been a tiny study about this diet done at Scripps in San Diego and they achieved excellent results (about 78% remission based on lab biomarkers) in Inflammatory Bowel patients.  

Keeping a food journal is critical.  Note foods consumed and symptoms.    As far as starving, make sure you are consuming enough fats.  

You can google the AIP diet.  No need to pay for anything if you land on a site that is trying to make money.  

Food can heal!  

I hope you figure it out.  If you have an autoimmune disorder, unless it is severe requiring medication ( which has its own set of risks and benefits), there is nothing you can really do about it.  It is not going to go away.  You just have to figure out how to feel better and get on with your life.  

Edited by cyclinglady
Typos

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Thanks for the feedback.  As some have suggested I started keeping a food diary a week or so ago.   (reading my chicken scratch later will be fun, lol).  It seems its a puzzle to figure out what the body wants, and it changes over time.  I get the feeling my body is tired of (some) dairy and gluten, but does well on soy milk.  It's the inconsistency that drives me bananas.  

@Ennis_TX keto is also used for those of us with seizures; I've never been disciplined enough to stick to it.  I am thankful meds work well for me.  

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6 hours ago, duckboxxer said:

Thanks for the feedback.  As some have suggested I started keeping a food diary a week or so ago.   (reading my chicken scratch later will be fun, lol).  It seems its a puzzle to figure out what the body wants, and it changes over time.  I get the feeling my body is tired of (some) dairy and gluten, but does well on soy milk.  It's the inconsistency that drives me bananas.  

@Ennis_TX keto is also used for those of us with seizures; I've never been disciplined enough to stick to it.  I am thankful meds work well for me.  

>.< I eat sweets, desserts, pizza, breads, etc daily....I just make them keto and even sell the cookies, cakes, breads, etc at farmers markets and my store. Heck even have quite a few test recipes and good recipes posted on my blog on this site.

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9 hours ago, duckboxxer said:

Thanks for the feedback.  As some have suggested I started keeping a food diary a week or so ago.   (reading my chicken scratch later will be fun, lol).  It seems its a puzzle to figure out what the body wants, and it changes over time.  I get the feeling my body is tired of (some) dairy and gluten, but does well on soy milk.  It's the inconsistency that drives me bananas.  

@Ennis_TX keto is also used for those of us with seizures; I've never been disciplined enough to stick to it.  I am thankful meds work well for me.  

Something that might help pinpoint other intolerances would be a doctor supervised elimination diet. The allergist you went to for the tests before might be helpful but not all allergists will help with eliminations. The doctor would first interview you to find out your typical diet and then give you a balanced starting point with 5 or 6 foods. You would then add back one food at a time in pure form for a week. If you react sooner you drop that food wait for the reaction to end then try another. It is a process and at first quite boring and you will start with foods you rarely eat (read may not like) as you are more likely to react to foods you consume regularly. My allergist basically saved my life by pinpointing the severe reaction to wheat and then referring me back to my GI who confirmed the celiac. Don't know if this would be helpful for you but thought I would bring it up in addition to all the great info you have already been given. I hope you get to the bottom of what is going on soon and are feeling better.

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I'm trying the elimination diet.  I got a 'maybe' on the test pistachios.  Which removing them from my diet and then taking a handful made me itch.  Check.  Will try some pistachio ice cream later on.  Found some non dairy, gluten-free.  Sounds yummy.  

Going gluten-free and dairy free for a while (ok, I will have to compromise on cheese some; what is Mexican without cheese??).  Was hilarious, bought some lactose free cheese and when I got home I saw in the ingredients "Contains Milk" lol.

And what drives me batty is that I eat relatively healthy to begin with.  I'm not a sweets fan.  I don't eat out often and normally cook myself (I'm not good at it, but put forth a valiant effort) with fresh veggies.  I haven't bought chips, cookies or coke in ages.  Not a lot of starchy carbs or salt.  Low fat foods.  I take my lunch to work, actually eat breakfast and try to drink water.  That is why all of this is frustrating.  I eat decently, exercise, good bloodwork results, 40 is the new 30.  Why the hell do my joints hurt, or am I exhausted?  My body has just decided it doesn't like something, I just don't know what.  Convincing a doctor of that is well, maybe just not happening.

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I am another one that does not get intestinal symptoms when getting glutened.  I get joint pains, sometimes headache, weak feeling in legs and arms, depressed, crying, muddy thinking, sometimes it makes my asthma trigger.  I tried purity protocol oats early on, and had to eat it for a month before I got any intestinal symptoms. So I'm also one that reacts to oats the same as wheat rye and barley.   And the advice is that just because you don't have intestinal symptoms, does not mean you are not having a reaction and getting damage in your intestines.  Good luck on getting this diagnosed.  You need to get educated on what is required for correct testing, the eating for 12 weeks, and also what the correct celiac blood test panel is.  THen you need to get a different doctor and make sure they are at least as knowledgeable as you will be after learning about these things, and insist they do the full celiac panel.  Otherwise you are wasting your time and money.  

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On 8/31/2019 at 5:30 AM, duckboxxer said:

 

Going gluten-free and dairy free for a while (ok, I will have to compromise on cheese some; what is Mexican without cheese??).  Was hilarious, bought some lactose free cheese and when I got home I saw in the ingredients "Contains Milk" lol.

 

There is a difference between a lactose intolerance (lacking the enzymes to digest lactose milk sugar) vs. a milk allergy which is due to reacting to milk proteins.  If you have a true milk allergy, you can not consume anything with milk.  

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On 8/31/2019 at 7:30 AM, duckboxxer said:

Going gluten-free and dairy free for a while (ok, I will have to compromise on cheese some; what is Mexican without cheese??).  Was hilarious, bought some lactose free cheese and when I got home I saw in the ingredients "Contains Milk" lol.

I am lactose intolerant and have a whey allergy...and corn allergy, UC, and Celiac....anyway.
I eat this one cheese brand (Lisanatti) that is whey and lactose free but has Casein protein and I am fine (Ironically most have issues with the casein protein)
But typically I stick to "Vegan" cheeses, Miyoko has some good Mozz and Smoked Mozz which can be great on Mexican they also make some great cream cheese spreads and some others, Leaf Cuisine makes a damn good pepper jack and smoked gouda cheese spread. Kite Hill makes some of the best ricotta cheese...they also make cream cheese but it contains xantham gum (another thing I have to avoid) They recently came out with a damn good greek yogurt from almond milk. Tree line makes some good spreads.
Spero foods Makes goat cheese knock offs.
There are some others that I can not have due to corn allergies but are supposed to be good like Pamela Creamery, Vio Life, and some people like Daiya but it makes many people sick due to other ingredients.

Try to find ones with the least amount of ingredients.

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