is this celiac??

[TrailWalker]

 

 

Hi. I'm new here and just joined. I've been suffering this past month with gas and bloating that just simply won't go away.. it all started when I went to my allergist and she decided to run a celiac blood test. The thing is before she said that I had been gluten free for 10 days and before that my only grain exposure was  a white bun about 3 times a week. So I thought when she said she wanted to do a celiac blood test that I should probably eat some gluten before the test. She told me to eat it for 10 days, as I had been gluten free for 10 days. So I tried to...but by day 4 I was so sick that I could barely eat anything!
 

My stomach was full of gas! Just drinking a tiny sip of water and I was burping, already full! I'm basically on a Paleo diet (plus whole milk) and I've been eating that way for years. I've been forced on to that diet because I'd get numerous reactions from processed foods. I had thought for years I had had a food allergy. See, I never had any health insurance so I couldn't go to doctor's. But I finally got insurance last year and I was finally able to get to the allergist. But all of my tests keep coming up negative. Because I never really knew what I was reacting to. I could only guess. I never dreamed my problem could be wheat! I grew up eating wheat! I had LIVED on pasta for years and years! But in retrospect maybe that's why I have celiac now?

 

My doctors are not too crazy about doing blood tests. I keep telling them I'm not sure I'm getting all of the nutrition I need in this Paleo diet. I'm not sure I'm covering all of the vitamins and minerals. And there's lots of stuff I can't eat because I react to it. Back in May my regular Dr ran a b vitamins test due to symptoms I had and my b1 was low. She said that was causing the "vibrations" in my legs and feet. I think others call it neuropathy??  So I tried taking a food based vitamin and it did get rid of the odd feelings in two weeks. But then once I started eating that wheat the vitamin no longer worked. The vibration came back that very night!

 

And I had heartburn which I NEVER had before! I had a bunch of other odd symptoms too and I wrote everything down in a food journal. The first reaction I had was mild all over body itching. Another reaction was extreme fatigue where I had to go to bed no matter what time it was. That was from whole wheat products, like Wheat Chex. I had not eaten ANY whole wheat products for Years. I also had odd gurgling noise in my guts and some odd bumps appearing and momentary pain in the gut area. Never had these before. I did have the gurgling gut a few previous times when I tried to eat a slice of pizza. It would make those annoying noises for about 3 days. So basically I was trying stuff so I could tell the allergist what food was causing me issues and it all pointed to grain type products.

 

Oh the other reactions I had got during the 4 days of eating wheat 3 times a day include: dry eyes, dry mouth, skin peeling on my hand, some mild jaw pain, feeling very tired (and each time I ate the Wheat Chex I had to go to bed about an hour later!!), My spit turned pinkish after brushing my teeth (blood??), Sharp pains to the tips of my big toes, that tingling got worse too! By day 4 not only were my legs and feet full of those strong vibrations but my left hand and arm we're going numb too! That really scared me! Someone who cares about me told me to "stop the foolishness" and to stop eating the wheat. So I did.

 

I really could not eat it anymore anyway. My stomach was so full of gas that I could barely eat ANYTHING!! I was lucky I could eat one meal a day!! So I went in the next day and gave the blood. I figured it didn't matter as the allergist had wanted to take the blood that same day anyway.

 

So the last day I ate any wheat / grain product was on July 11. Well I STILL have the gas and bloating. It just won't go away. I'm basically eating fruit, veggies (all fresh and organic from produce department), grass fed beef, free range chicken, whole milk, whole milk yogurt, pasture butter, some kombucha to try to get that stuff in it (only the one brand that doesn't have extra stuff added to it). After living with these "allergies" for close to a decade or maybe a bit longer I get paranoid over food that has extra stuff in it or those "natural flavors" added as sometimes I react badly to those flavors.

 

In the past my "allergies" would make my fingers swell up and crack from touching or eating the wrong thing. In one case I recall it was organic cheese crackers. Another reaction was intense itching that went on for days. I would scratch my skin raw. One of the foods that gave me that was all purpose flour. Another reaction would be insomnia or this weird insomnia where I would be totally wired and wide awake for days. In one case it was caused by a natural cough drop that had those Flavors in it.

 

Sadly I also react to stuff like certain perfumes, air freshener, cooking corn (it makes my face itchy when other people boil it on the stove but I don't know why), chemicals, cooking smoke from festivals (no idea why but I get bad post nasal drip and my eyes start stinging or burning)...

 

I had bad B vitamin deficiency in the past while I had been eating meat every day. I had to look the signs up on the net myself to figure out what it was. But I had those vibrations in my legs, sores in my mouth that we're painful and also an open sore on my face that leaked yellow liquid. When I ate a lot of beef liver it healed up. I don't know why I got it while I had been eating meat every day though... I had been eating that bun every day (or 5 days a week) back then so maybe that was it??

 

Anyway I'm down to eating one meal a day most days now. I tried taking b vitamins but they gave me reactions. The one was even marked Gluten Free, but I never had any luck in the past with vitamins. I don't know why. I just react to too much stuff and all the tests come up negative. I just don't know how to get rid of this gas. I drink water and I burp! I wake up burping!

 

I did go see the gasterologist on Fri. That meeting did not go too well. She could not understand why I don't eat preprocessed food. And she did not seen to like my Paleo diet. She told me that I was constipated (even though I was going) and told me to eat these things called psyllium husks. It seems to be made in a place that has wheat. I took it 2 days sofar and my guts are once again making odd sounds and there is weird feeling in them. Like a very faint tremble? And I had the stabbing pain in the toes. I am doubtful this is going to cure the gas?

 

Can these husks really cure the gas? Do you think I have celiac? My blood test came back negative but I don't think I ate the wheat long enough? I don't think I'd be able to eat it longer. Look what just 4 days did!

 

The gasto wanted me to go back and get a different test ..a thing up the rear to look for poop blockage (??) And a thing down the throat. But I doubt I can do these due to my problems with chemical reactions. Like with the air freshener...my face turned red and swollen and the inside of my throat burned for an hour. Yet it didn't bother anyone else! Also if I use the wrong bar soap my skin peels off. So I was told I'd have to drink something for this scope and I'd be scared of what reaction I might get from the stuff and then the doctors would get all confused about not know what to do. I never had these problems as a kid. I was normal but overweight. In my early 20s I was about 210 pounds. Now I'm about 135 due to the Paleo diet.

 

I'm pretty sure this gas is caused by my 4 days of eating wheat. I just basically ate wheat chex, one other organic cereal and some rye bread. Nothing I had to cook. And I don't use any types of goop like sauces, mayo, jelly, etc. I don't trust that stuff, as I got bad diarrhea in the past many, many times from catsup! No idea why as I can eat tomatoes.

 

Sodo you guys have any advice on how to get rid of this gas? Does this sound like celiac? The allergist said I am sensitive to wheat as my test was negative. The gastroenterologist said they won't know unless they do the scope and I eat wheat.

 

My main concern is that I might be running low on my vitamins because I can only eat one meal a day due to the gas in stomach. I'm hoping this symptom lasting so long is normal for a celiac after eating wheat... because that means it might eventually go away on it's own.

 

And don't tell me to take Brewers yeast because I the past I reacted to that too. My mom could eat it but not me. My mom had these same "allergies" but she distrusted doctor as they never helped her and so she never really went to any. She passed away last year.

 

I think my allergist has given up on trying to figure out what I'm reacting to... unless it really is the dumb wheat! But then why does my face get itchy from boiling corn?? Have not eaten that for years either...

 

Sorry so long. Any advice would be good. Thanks in advance for any help you can give. My regular doctor told me that I an perfectly healthy and that I don't have to come back unless I get sick. I think she thinks all of these allergies are in my head but they are not. Other people have seen me react to stuff, like to the corn and to that air freshener.

 

[GFinDC]

Hi Trailwalker,

The gluten challenge is 12 weeks of eating gluten before the blood tests, or 2 weeks of eating gluten before the endoscopy.  So you didn't do the challenge long enough for accurate blood antibody testing.

There isn't much of any treatment doctors can do for celiac disease.  It really is the gluten-free diet that makes the difference, and time.  So getting formally diagnosed may not be worthwhile to you.

What may help your symptoms is to cut out all dairy from your  diet.  Celiac disease damages the villi in the small intestine that make an enzyme to digest milk sugar.  So many  new celiacs are unable to digest milk properly.  Another thing that can help is to eliminate all sugar and starches from your diet.  Things like sweet fruits and rice, can cause gas.

A diagnosis is nice to have, but sometimes it is more risk than it's worth.

[TrailWalker]

I need to eat bananas every day to get my potassium and magnesium. If I don't eat 2 or 3 each day I get the jerky leg and then I can't sleep so I can't cut those out.

 

And I can only skip milk for maybe 2 days and then my teeth will get achy. It's my source of calcium and vitamin D.

 

I don't eat rice.

 

I'm relying on actual food for all of my vitamins and minerals. So there are ones I cannot cut out.

 

I'm waiting to see a nutritionist but have not seen one yet. My regular doctor said back in May I should go see one and my caseworker has me on a list to see one but I don't know when that will be. I lived with lifelong trauma and just got out of that situation so trying to recover...it's why I have a caseworker. But no one ever told me how to balance this diet.

 

Would cutting milk out for 2 or 3 days be long enough? Because that's as long as I could do. I've done that in the winter sometimes when my post nasal drip was really bad and I have to sleep sitting up and I'm coughing like crazy ( as it turns into a cold-like thing but it's not a cold - it starts with me breathing in the wrong fine like some perfume, wood smoke, those cooking fumes from festivals) ... So I cut it out then but then my teeth start getting achy by day 2 or 3 and it goes away when I start drinking my 4 cups of milk a day. So that's as long as I could stop..

 

My diet is pretty much regulated by these vitamin and mineral demands and what food has what in it . And lots of other foods on the lists I can't eat.

 

My mother and I we went from eating a normal American diet of preprocessed food to eating Paleo but no one ever taught us how to really do the diet in terms of nutrients. We just started living on meat, fruit, veggies, milk, etc.

 

And I don't eat sugar. I've cut that out years ago.

 

The allergist did not care how long I ate the wheat. She wanted to run the blood test that same day, even though I had been gluten free for 10 days and before that I only ate a white bun 3 times a week. Then she told me a "normal serving" of wheat was with each meal. I didn't even know what a "normal serving" was!

 

But that whole wheat in the Wheat Chex really hit me hard! Oh I forgotten to say it also gave me heart palpitations too.

 

I had always thought my problem was caused by soy. I never thought it could be wheat as I ate wheat as a kid!

[Ennis-TX]

...OK exactly what GFinDC said For the antibodies to show in the blood they say 12 weeks but I have seen some work with min of 8 weeks gluten diet, for damage to show on the scope they run down your throat (endoscope) 2 weeks of gluten, at least 1-2 slices of bread of day they say. But do note many of us can have symptoms after a gluten exposure that last over 6 weeks.

Milk...cut it and change to Almond, or Cashew milk they are fortified with more calcium then cow milk and better for you. Think Paleo here...if you need a logical reason I can open up the whole dairy and breast milk can of worm debate.

Sunflower seeds, spinach, almonds, heck even fish and chicken has decent amounts of potassium, do check info on them...I had to give up all carbs and go paleo with keto macros. I have to eat large amounts of certain foods but it is manageable, Although I do take Vitamin C supplements to boost my iron absorption.

The jerky legs, nerve issues, numbness etc. It might be another salt, look up magnesium deficiency it is very common with celiac and many of us have to supplement it.  Natural Vitality calm and Doctors Best Magnesium Glycinate are best. I can go over dosing and which is best if you would like.

B-Vitamins, they work full spectrum, I supplement in liquid forms with each meal eating twice a day using Liquid Health versions. But I know some people that make swear by natural forms from like liver pate....I think I would rather take in my tea.

The amount of issues you have might be more then just one disease like Celiac. many times AI issues go together, I got Ulcerative Colitis with Celiac, and gluten ataxia that last of which damaged the nerves to my pancreas and stomach and led to keto diet, taking pig pancreas enzymes with food, and certain protocols for food cooking and prep.

Keep a food diary, it helps you know of issues and have something to show doctors, nutritionist, and dieticians.

You will see many of us have list in our signatures about some of our others issues.

I like you tend to make my own foods, I have a few companies I trust, and will have processed nut based cheeses or certain other products.
I even run a paleo based bakery and started into catering and meals past few years. >.<  I can make about anything paleo and keto.
Also another thing...I used to be over 200lbs before my dia. I dropped to around 127 and only after 5 years started putting back on muscle weight.

Another concept to consider, what gluten free means under a celiac diet....you have to get rid of and throw out a bunch of stuff, replace cutting boards, colanders, scratched pots, Tupperware, contaminated condiment jars, etc. Our immune systems react to gluten like a germ so residue, crumbs, flour dust can all trigger a reaction. Why many of us life in dedicated household and rarely eat out.







 

[TrailWalker]

I don't use cutting boards, colanders, condiments, etc. And my pot is new and there never was any wheat products in it. It only had meat, eggs or veggies in my 2 pots and I bought them new about a year ago.

 

I can't eat sunflower seeds because I can't find any that are not on shared lines with soy in my local stores. And the almond milk always has lots of extra junk added to it so I won't buy it or drink it. They always seem to add stuff like natural flavors or other stuff and I don't trust that stuff. I've had too many reactions to trust stuff that has vague ingredients. I used to buy a brand of organic pumpkin seeds but I see that is on lines with wheat so I gave them away. If the ingredients is some weird word that is not actually food like flavors, carrageenan, lecithin, etc I'm not going to eat it. Carrageenan once made me puke. I've looked at all of those fake milks and they all have stuff added, even the ones in the health food store. I've never seen one that was only 1 or 2 ingredients.

 

And I react to vitamins too. I tried two different vitamins this last month. One made the leg vibrations worse and it gave me heartburn and my tongue was burning. The other one made me drool and gave me post nasal drip. Over the years I've tried lots of different brands and none seem to work for me. After awhile I start reacting in some ways. A lot of them make my joints very bad and then I can't walk. And I like walking. Yesterday I walked about 6 miles. The other day I walked even further. I can do half marathon.

 

And I don't have any Tupperware. I react to plastics too. It gives me achy joints. Dasani water bottle did that. I tested it. I put tap water in the bottle, let it sit for about 20 minutes, drank it and later had the same sore ankle. I can't use fake leather purses (polystyrene) as often just the act of touching it would make the tip of my finger crack and start bleeding. I switched to all fabric purses and no problems. I seem to be ok with real leather.

I'm living in a new apartment. I never had ANY flour in this apartment. And I cleaned it from floor to ceiling before I moved in, in March.

Eating a banana makes the jerky leg go away. That's why I need to keep eating bananas even though it is a fruit. Vitamin pills and me don't get along. I could take them as a kid but once I got these allergies I seem to react in some way so then I just end up wasting money on a bunch of pills I cannot eat. I don't know why I can't eat them and my doctors are not interested. They even won't run a vitamin panel to see if I'm low on other vitamins. Only will run one if it's the right time of year and if I have symptoms that point to a particular vitamin and then they will run a panel for that vitamin.

I can look for those magnesium ones at my local health food store but they mostly seem to carry the same brands. We have Whole Foods, Fresh Thyme and Outpost here.

 

My main doctor thinks my problems are somatic. She told me I was perfectly healthy and that I don't have to come back to see her. I guess I have the same problem with doctors that my mom had. They don't really help that much. I've had very little experience with the medical system and for most of my life (I'm 47 now and about 135 pounds and have some good muscle from the walking I do and I lift handweights on occasion) I didn't go to doctor's at all. I was 210 before (around 2000) so I lost all of that through diet and exercise. Mostly it's diet. I still have a little fat on my lower stomach I'd like to get rid of.

 

My face is always red too. My cheeks, chin, nose and the area right under my eyebrows. I try to ask my doctors about it and they just tell me I look fine. I've tried various stuff on it but nothing seems to affect it. I told the one doctor I had a red/pink spot on my knee since March and she made nothing of it, said that knee bruises take a long time to heal. Well now there are a few more smaller spots next to that one. I think they might have appeared after I ate that wheat? Anyway I remember years ago my face was not red like that. It just appeared maybe ... 10 years ago and it stayed that way. Sometimes it bugs me, as I wonder why does it look that way? It's certainly not sunburn. I even stopped using soap on it and only oil clean my face. So that is the reason I tried going totally gluten free before the test. I wanted to see if going gluten free would clear up my red face. One time a rude man told me I "have had enough to drink" when I stopped in a place to buy a tea...he was the one waiting on me. He saw the red face and thought I had been drinking alcohol while i never even tasted a drop of alcohol in my whole life! It made me very upset! I only drink unsweetened tea by the way.

 

I'll probably never see that dietitian.

 

I was eating almond for my vitamin E source but I'm sure they are probably cross contiminated too. And it's impossible to eat 5 avacado a day for vitamin E. A lot of the top sources I cannot eat because I can't find brands that are safe with cross contaminated.

 

[Ennis-TX]

... Malk Organics (http://malkorganics.com/products/) has plain nut milk milk but not calcium enriched they have it at most Whole foods, I have no issues with Almond Breeze....or a local brand  You might consider some of the greens here instead of milk for your calcium if you want to go whole foods nothing processed. https://www.nof.org/patients/treatment/calciumvitamin-d/a-guide-to-calcium-rich-foods/

https://www.mygerbs.com/ has allergen free Seeds and Seed Meals Check them for plain sunflower and pumpkin seeds I just get the plain roased or raw normally I get my Hemp Seeds, Chia Meal, Whole Pumpkin Seeds, and Sunflower Kernels from them. They also make seed meals chock full of fats and protein PS store in fridge as seeds can go rancid and most stores ignore this fact

I had issues with nuts and peanut CC myself so I just buy all my Almonds/Almond Meal straight from the growers from a family owned operation ordering online You have to buy in 25lb cases though....I just repackage them into airtight containers and last me a month or so I have a referral code if you want to save us both some money http://alldrinbrothers.refr.cc/jackvineyard

I order most my vitamins online between Luckyvitamin, and Vitacost I wait for 20% off sales normally and buy the lowest bidder.

[GFinDC]

8 hours ago, TrailWalker said:

...The allergist did not care how long I ate the wheat. She wanted to run the blood test that same day, even though I had been gluten free for 10 days and before that I only ate a white bun 3 times a week. Then she told me a "normal serving" of wheat was with each meal. I didn't even know what a "normal serving" was!...

You should be seeing a GI (gastroenterologist) for celiac testing, not an allergist.  Celiac disease is not an allergy.  Celiac is an AI (auto-immune) condition.

Allergists are interested in IgE immune responses, and test for them.  Celiac disease is either a ttg, IgA or IgG immune response.  IgE responses can occur very quickly and allergists expect that quick response.  Celiac testing does not involve the same immune cell types so the testing is different.

You might try an internet search for celiac in your state or city.  You may find a GI doctor that way or maybe a support group.  Not all doctors are aware of proper celiac testing procedures.  It is good to check with celiac groups in your state / city for a doctor recommendation.  There is a doctor forum section that has some suggestions on this site.

[knitty kitty]

TrailWalker, 

Welcome to the forum.  You've found a good place to get good advice.

I agree with GFinDC.  Get to a doctor who has experience with Celiac Disease.  Celiac Disease is not an allergy.  You do not need to be seen by an allergist!   

Your symptoms sound similar to the ones I had before my diagnosis.  

I had Sulfite/Sulfate Hypersensitivity.  I reacted to perfumes, air fresheners, cleaning products, dryer sheets, artificial flavorings, artificial coloring, wood smoke, brewers yeast, soaps, carrageenan, eggs, dairy, shellfish, crustaceans, jams and jellies containing pectin, condiments, anything fermented and some medications.  I even reacted to Sulfites in some black teas (tea leaves are fermented).

I felt like I was reacting to everything around me including plastics and polyurethane.  There are Sulfites in these things.  (Yes, I only use leather purses, too.  I don't use cloth because they might pick up gluten crumbs or perfumes).  

My face would turn red and rashy, then peel. (Glycerin soap helps alleviate the redness.)  I would have post nasal drip, dry eyes, heart palpitations, joint pain, digestive problems like dumping d, bloating and strange gurgling.  

Here's an article that explains more about Sulfite Hypersensitivity.  (Note that Vitamin B12  helps alleviate sulfite hypersensitivity.  Many people with Celiac Disease don't absorb adequate Vitamin B12.) 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4017445/#!po=30.5556

Here's an article by a doctor with Celiac Disease and Sulfite Hypersensitivity caused by Mast Cell Activation Syndrome...

https://www.thepatientceliac.com/tag/celiac-disease-and-sulfite-intolerance/

Mast Cell Activation Syndrome and Histamine Intolerance can be found frequently with Celiac Disease.  Celiac Disease is an autoimmune disease.  Your body's autoimmune system over reacts to the smallest irritant.  

Celiac Disease causes malabsorption which results in malnutrition.  Your body can be deficient in vitamins and minerals needed to rid itself of excess Sulfites or other irritants.

Another article related to the one above

http://www.thepatientceliac.com/2014/01/04/mast-cell-activation-syndrome-madness/

And more info on MCAS...

https://en.m.wikipedia.org/wiki/Mast_cell_activation_syndrome

I found the Low Histamine Diet and the Autoimmune Paleo Protocol Diet (the AIP diet)  together helped to relieve my symptoms and put me on the road to recovery.  

The Low Histamine Diet details are here.  (Make sure everything is gluten free, dairy free and grain free, too...) 

https://www.histamineintolerance.org.uk/about/the-food-diary/the-food-list/

The AutoImmune Paleo Protocol diet is here...

https://draxe.com/diets/aip-diet/

So follow the AIP diet, making sure your food choices are low histamine foods.  Keep a food journal.  And....

Incorporate Bone Broth for healing your gut, and as a source of calcium and other minerals and vitamins you think you can only get through milk.  (Kale and other leafy greens are good sources of calcium, Vitamin E, and potassium, too.)

https://draxe.com/diets/bone-broth-fast/

This is the bone broth recipe I use...

https://www.epicurious.com/recipes/food/views/beef-bone-broth-51260700

Quit consuming DAIRY!  Celiac Disease damages the villi that produce the enzyme that digests the sugar in milk, lactose.  That undigested lactose and other carbohydrates are fermenting and feeding the wrong sort of bacteria in your gut causing all sorts of problems.  Some Celiacs have problems with Small Intestinal Bacterial Overgrowth (SIBO).  By going on the AIP AutoImmune Protocol diet, those troublesome bacteria are starved and die off leaving the good intestinal flora to repopulate.

Do get checked for vitamin and mineral deficiencies.  The dietician may be able to help with this.  Taking vitamin supplements may skew tests for vitamin and mineral deficiencies. You may be asked to quit taking supplements for a month before the tests.  The water soluble vitamins are the eight different B vitamins and vitamin C, which need to be replenished every day because they aren't stored in the body long.  Niacin (B3) and thiamine (B1) are necessary to heal the intestines.  Niacin will cause flushing, but that goes away as you take it regularly.  A good B Complex containing all the B vitamins may be helpful.  I took niacin with every meal because I was so ill, in addition to the B Complex. The fat soluble vitamins, A,D, E and K, may be deficient, too.  My Vitamin D level was extremely low.  Once I got my Vitamin D up, I felt much better.  Vitamin D helps stabilize Mast Cells so they don't degranulate and release histamine.  Liver is a good food source vitamins A and D.  

I hope this helps.  Keep us posted on your progress.