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dreamindarlin

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dreamindarlin Rookie

:( Until today I had never heard of this disease. I think I'm still in shock from the doctors appt today. Here is a little background.

About 2-3 weeks ago I took my 6 year old son to his peds dr. He had a fever, vomiting, stomach pain, and diarehea (sp?) Doctor sent us home and said it was a virus or early appendicitis. That was on a Friday. On Monday he was so sick and threw up blood. I took him to the ER. They did a CAT scan and told me he had intussesption (One part of his colon was basically slipping into another) They admitted him and he spent 4 days there. They did an endoscopy and the doctor told me it was normal except for some inflammation and they took some biopsies. He seemed to be doing better we came home and saw the doctor today. My son's biopsy came back positive for Celiacs disease. BUT,

his blood test were negative for it. The did more blood work today and are looking at 3 different markers. In the meantime he is to start the gluten free diet and the will recheck his blood in a month. He also scheduled him for a bone density scan this Friday.

I have been reading and reading trying to learn all I can about this. I keep crying about it........what about his bday cake? No cookies, no pasta, pizza. Seems like everything is a no no. The doctor also told me Celiacs causes brittle and weak bones thus the reason for the denisty test and can cause him to lose teeth?

My husband is all for a 2nd opinion and there are no other specialist around here. But I am willing to drive.

Sorry to make this so long Im so scared and needed to vent. Any advice or info you have I would appreciate.

Thank you


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MaryJones2 Enthusiast
:( Until today I had never heard of this disease. I think I'm still in shock from the doctors appt today. Here is a little background.

About 2-3 weeks ago I took my 6 year old son to his peds dr. He had a fever, vomiting, stomach pain, and diarehea (sp?) Doctor sent us home and said it was a virus or early appendicitis. That was on a Friday. On Monday he was so sick and threw up blood. I took him to the ER. They did a CAT scan and told me he had intussesption (One part of his colon was basically slipping into another) They admitted him and he spent 4 days there. They did an endoscopy and the doctor told me it was normal except for some inflammation and they took some biopsies. He seemed to be doing better we came home and saw the doctor today. My son's biopsy came back positive for Celiacs disease. BUT,

his blood test were negative for it. The did more blood work today and are looking at 3 different markers. In the meantime he is to start the gluten free diet and the will recheck his blood in a month. He also scheduled him for a bone density scan this Friday.

I have been reading and reading trying to learn all I can about this. I keep crying about it........what about his bday cake? No cookies, no pasta, pizza. Seems like everything is a no no. The doctor also told me Celiacs causes brittle and weak bones thus the reason for the denisty test and can cause him to lose teeth?

My husband is all for a 2nd opinion and there are no other specialist around here. But I am willing to drive.

Sorry to make this so long Im so scared and needed to vent. Any advice or info you have I would appreciate.

Thank you

Welcome. You've found a very supportive community here.

If your son's biopsy was positive he has celiac disease. Bloodwork is often falsy negative. But the good news is it's not the end of the world and he can live a perfectly healthy and happy life and he can eat cookies, cake and pizza!

I suggest you start here and us as many questions as you need.

happygirl Collaborator

It IS overwhelming at first.

If his biopsy was positive for Celiac, he has Celiac. The blood tests are less sensitive than the biopsy.

There ARE alternatives - he can still have beautiful birthday cakes, spaghetti and meatballs, and Friday night pizzas. I promise. They are just made with different ingredients.

There is hope - hang in there.

Read the book listed in my signature - by a leading Celiac expert.

Hopefully this will make your life easier with food label reading ---

Unsafe ingredients: https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html

Safe ingredients: https://www.celiac.com/articles/181/1/Safe-...ents/Page1.html

A list of companies that has a clear gluten policy. If you don't see "wheat, rye, barley, barley malt, oats" on the labels, its not there, or hidden in "flavors, starches, etc." Open Original Shared Link This makes shopping MUCH easier.

FDA foods are required to list wheat - it cannot be hidden.

Rule #1: Never eat anything without reading the label first.

Rule #2: Consistently check labels, even of your favorite products, as product formulations can change.

Rule #3: If you are unsure of an ingredient, or the company's policy on labeling, call the phone number on the back of the product or email the company.

Hope this helps.

Lisa Mentor

Many of us have dealt with the shock that you are experiencing now, with with ourselves or close family members.

I too, came home from the GI and looked it up on the Internet. I found this site and I haven't left. This place and the good people here will get you through this.

Celiac can be diagnosed by three means: 1) blood testing; 2) endoscopy/biopsy; 3) positive dietary response. Other than the positive dietary response, testing is not as accurate as we would like. But, I believe that the envelope for a positive diagnosis range is too narrow.

Your son does have Celiac according to his biopsy. He does not have to have surgery, nor medication to fix this problem, just a change in diet. Birthday cakes, pizza, grilled cheeses are still available with just a small adjustment. And, how lucky you are that you found an answer so quickly before other associated illnesses effected his young little life. Many people here have gone years and years suffering before they recieved a diagnosis.

Also, please know that the tendency for Celiac is inherited. You might find that others in your family has similar issues, as well as you or your husband.

The diet can be tricky in the beginning, but there are many of us who will walk you through it.

It's not the end of the world, it's the beginning. ;)

ShayFL Enthusiast

Welcome!!

I KNOW IT FEELS LIKE IT NOW.....but it is far from the end of the world. To me the end of the world would be for me to lose my hands or my vision (I am an artist). Giving up gluten.......a piece of cake! Cuz.....I can eat cake all I want. I can buy pre-made gluten-free cake that is super yummy. I can buy things like Pamela's mixes that are super easy to make. Or I can get all fancy and bake from a recipe. I can have chocolate cake, carrot cake, yellow cake, lemon cake....did I mention I CAN HAVE CAKE!!

And so can your son. It take a few months to get the swing of things and learn where to buy what you need. But soon enough it will be second nature. And you are SAVING YOUR SON"S LIFE!! How awesome is that??? With a dietary change he can have a perfectly normal (and likely more healthy) life.

This forum is amazing and you can come in here anytime of the day and ask a question and you will likely have an answer within hours.

***Let me add that I am grain free right now. And today I had almond crescent cookies that taste like the real deal. I made them myself with almond flour. LIMITATIONS are only in your mind. It is a REALLY BIG World out there and were are here to help. :)

dreamindarlin Rookie

Thank you all for all the info. The doctor did say that after we do a repeat on the blood work if his markers were still the same there could be something else going on but said he didn't want to "overwhelm" me today and we would talk about it at the next appt.

I was raised in the south and know how to cook anything breaded and fried so this will be a new experience for me.

I did go talk to his teacher/principle, and cafeteria manager at his school. They had never heard of it before and said basically there wasn't going to be much choice for him except for salad and fruit and veggies. She said she breads all the meats.

Did anyone get a 2nd opinion? My husband thinks its a good idea I just don't know.

Another question.......he loves McDonalds like all kids. We went today and they made him a cheeseburger minus the bun and he had fries. In my paperwork from the doctor on one page it says potatos and fries are fine but on another page it says be careful of fries?

dreamindarlin Rookie

I also wanted to mention I have had bowel/stomach issues all my life. The doctor said they would need to get me tested.........wonder if this could be the answer to the pain from all the years?


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ShayFL Enthusiast

McDonalds fries have gluen. :(

It is a new world for you and your family and there will be challenges. But keep your eye on the prize. A healthy little boy. A second opinion is never a bad idea, but keep in mind that bloodwork is notoriously inaccurate in children. The biopsy says it all.

You might also need to go dairy free for a few months until his little villi heal and he can produce lactase again. The tips of the villi are damaged and they are the ones that make us able to digest milk.

Im southern too. :) You can bread things with gluten-free flours or cornmeal. Porkchops with cornmeal are yummy.

Maybe your challenge will be to make yummy gluten-free hushpuppies and then post your recipe in here for us to drool over. But get the basics down first.

Fresh meats, veggies, fruits, nuts, eggs, rice, potatoes, plain spices. This is a good start.

Amyleigh0007 Enthusiast

It is my understanding that McDonalds fries are okay. But, I know that is a big debate ... My son eats them without problems and so do I.

When my son was dx it felt like the end of the world. I spend many months in mourning. I was mourning for our old carefree life. But, when I saw the awesome results from the gluten free diet I snapped back into reality. My son was very tiny. He is 8 and wore a size 4. He was barely 40 pounds. He has been gluten free since March and has gained 12 pounds. He used to have terrible leg cramps every night and he hasn't had any since going gluten free. He used to have a BM once a week and that was a huge, painful ordeal. He goes everyday now. His self esteem has soared because he is catching up in growth to his friends. He is now strong enough to play sports. He played baseball over the summer and now he is on a bowling team. He has a blast. I now think that his Celiac dx was the best thing that could have happened. I can't even imagine what his health would be like right now if he hadn't of been dx. So, it might seem like a low time right now but you have to be positive. Be thankful that you have the dx and your son can begin to heal.

Lisa Mentor
McDonalds fries have gluen. :(

.

The Celiac Disease Foundation, the Celiac Sprue Association and The Gluten Intolerant Group have independently tested McDonalds French Fries and the testing showed no significant levels of gluten. There is a risk of cross contamination. BUT, this is a discussion for later and no need to overwhelm dreamindarlin.

Some choose to eat McD's Fries, others don't. I believe it's a personal choice.

Yes, it would be WISE to be tested. Continue to eat gluten until all testing is finished.

Lisa Mentor

Just wanted to add...this the the panel that your doctor should order to test for Celiac Disease:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

...yep, all of them. ;)

dandelionmom Enthusiast

Hang in there. It is a huge thing to hear but so very manageable. If you like to read, I seriously suggest picking up Dana Korn's Kids with Celiac Disease : A Family Guide to Raising Happy, Healthy, Gluten-Free Children.

There are really great gluten-free substitutes for all those foods you mentioned.

It takes a couple of months to figure all of this out but after that you're going to be a pro. I didn't believe it when people told me that but it is true.

Also, have everyone in your family tested. After my daughter's diagnosis, we found out I have it, my gramma had it, and my baby has it.

psawyer Proficient
The Celiac Disease Foundation, the Celiac Sprue Association and The Gluten Intolerant Group have independently tested McDonalds French Fries and the testing showed no significant levels of gluten. There is a risk of cross contamination. BUT, this is a discussion for later and no need to overwhelm dreamindarlin.

Some choose to eat McD's Fries, others don't. I believe it's a personal choice.

Well said, Lisa. There is plenty to read here about McD fries, but it is way down on the list of priorities for someone new to the diet. :blink:

dreamindarlin, welcome to the board. There is a big learning curve, but you will find answers and support here.

dreamindarlin Rookie

Thank you all so much for the info and support! I went grocery shopping and found quite a few gluten free items!

But.........I need your help!!! What do you pack for lunches at school? The school my son attends has never heard of celiac's the only choices he will have is salad or veggies and a piece of fruit. He can't have bread so sandwiches are out.....so what do you pack?

Thanks!!!!!

happygirl Collaborator

Fruit, cheese snacks, chips, veggies, cookies, pudding, sandwiches, or lunchmeat roll ups ..... just like lunch before - just with substitutions. If you need specific subsitutions, just let us know!

Darn210 Enthusiast

Welcome dreamindarlin!!! You have found a wonderful resource and lots of new friends to offer advice and share their experiences!!

My daughter was diagnosed at 6. It was a complete shock to us also. I had heard of Celiac disease but it was not even mentioned as a possibility until I went in for her post-endoscopy appt and received the diagnosis. I couldn't believe it. We did get a second opinion. He didn't order any additional tests, just talked to us about the tests that had already been done (he had copies of all the results). His opinion was . . . Wow, I would never had suspected Celiac based on her presenting symptoms, but the tests say she has it and it's rare for a false negative. He recommended we challenge her at a later date . . . which actually happened accidentally about 8 months later and her reaction was the final proof. If you need to get a second opinion to help you come to terms with it, then do it.

I also just want to tell you not to be too hard on yourself when you mess up . . . because you will . . . it's all about the learning curve. You'll get the hang of it, and it will happen surprisingly quickly.

We pack all of my daughter's lunches. Our accidental challenge was actually the result of the one school lunch that was deemed safe but the supplier made a product substitution.

Her lunches contain stuff like cheese sticks and loose ham, peanut butter and nutella on a cold pancake, peanut butter on a corn thin (like a rice cake but thinner), mac & cheese or hot dog in a thermos. I've also seen the suggestion of ham/tuna/chicken salad scooped up with tostitos but my daughter is not into those yet. The rest of the lunch is the same . . . fruit, chips, pudding, (gluten-free) cookies, etc.

In my opinion, sandwich bread is the hardest thing to substitute . . . it's not bad toasted or fresh out of the oven. Everything else . . . cookies, cakes, muffins, etc . . . we (the whole family) is perfectly happy with the substitutions. Just like the gluten stuff . . . made from a mix is better than the prepackaged and made from scratch is best of all.

Some good basics:

Tinkyada Pasta

Pamela's Pancake/Baking Mix (I use this for pancakes, and for coating my fried chicken)

Rice Chex (besides eating as a cereal, this is what I use in my meatloaf)

Bell & Evans gluten free chicken nuggets or tenders (for those nights you don't feel like cooking)

Van's gluten free (toaster) waffles

Let us know what your son is missing most and we'll be glad to help.

dreamindarlin Rookie

sandwiches???? Where do I buy a bread subsitute? Or do I have to make it? Is it hard to do?

happygirl Collaborator

There are many, many, many recipes for bread on this board, there are many special order breads you can buy, and there are mixes that you can make. Some stores carry some gluten free breads. As with many gluten free products, there is great variability in the quality and the taste. Some are wonderful. Some are terrible.

There are lots of flours that are not WHEAT flour. Rice flour, corn starch, tapioca starch, potato starch, bean flours, etc.

Just one example: Open Original Shared Link

Look through the receipes section, as well as the food section, and you'll see many other great brands. :)

dreamindarlin Rookie

Thank you Janet! That is alot of helpful information!!! My son is so picky.....he doesn't like peanut butter. But he does love hot dogs. Does your daughter eat them cold? I don't know if my sons school would heat them up or not.....

What is your feelings on oats? From what I've read there is alot of controversy on this. I read one place that oats were toxic for celiacs but another site said they were perfectly fine.

You guys dont know how much better you all have made me feel. We will survive and get through this. Thank You

happygirl Collaborator

Regular oats are not okay.

Certified gluten free oats (has to say that on the package - and are usually only 'specialty' brands - not Quaker, etc.) are okay for some Celiacs. Most can tolerate them, but a minority cannot.

Darn210 Enthusiast

Also best to be on the diet awhile before you try the gluten-free oats. My daughter's doc gave the OK at the 6 month mark. And when you try it, try just a little.

Also forgot to mention . . . you should send an "emergency snack pack" to school for his teacher to have on hand. Our school doesn't allow parents to send stuff in for birthdays, but they still seem to have food brought in for one thing or another. If something gets passed out for everyone (one time it was the art teacher passing out goldfish crackers), then my daughter gets something from her snack pack. It's got a couple of pkgs of chips (lunch size), tootsie rolls, fruit chews, smarties . . . I've told her to pick something that is comparable to what the other kids are eating, but I'm sure she's picking whatever she wants ;)

I also told her (warned her), quite often in the beginning, that sometimes we would get surprised and not have a substitute treat with us but she would always get something when we got back home. And believe me, she remembers!! "Mom, everyone got an Oreo today and I didn't. I think I should get a bowl of ice cream now." :lol: Oh yeah!! She works it!!

Some schools will heat stuff up, others won't. I don't even try (it's a fairly big school . . . lots of kids to get through the lunch line). If I was going to, I would probably go through the school nurse, she has let me use her fridge/freezer at times and I think she actually has a microwave in her office. Invest in a good thermos. I initially got a store brand one because it was cheaper but it just didn't work that well so I ended up buying the one that I should have in the first place, a Thermos brand food jar. It has a large opening so that you can eat out of it. Works well for mac&cheese and leftovers (if it was something they would eat the first time around, that is).

CeliacMom2008 Enthusiast

We use Gluten Free Pantry Sandwich Bread mixes. The regular mix by itself is good for sandwiches and freezes pretty good. We also add cinnamon and raisins and drizzle it with a glaze made of powdered sugar and milk for a dinner bread/dessert.

Also, Pamela's pancakes make excellent sandwiches. My son LOVES PB&J on Pamela's pancakes.

For lunch, get a good thermos. You can pack rice dishes (my son really like fried rice), mac & cheese, hotdogs, soups, stews, stroganoff, spaghetti, etc.

Our whole family went gluten free inside the house when my son was diagnosed last Dec. It really is doable and after the learning curve is just fine. I had my son's birthday party this summer and served everyone gluten free cake and not one person knew any different. Kinnikinnick makes great mixes. I doubt anyone would be able to tell the difference from Pillsbury. We also like Gluten Free Sensations chocolate chip cookie mixes.

For pasta, try Tinkyada or Quinoa. Tinkyada seems to be a very popular favorite around here. We personally love Quinoa and I'd eat it over our old spaghetti anytime.

Pizza is definitely doable. I used to be the world's worst homemade pizza person. No more! In fact, my mother and I went to California Pizza Kitchen last weekend and I barely touched my pizza. I told her I'd be making good pizza later that weekend - gluten free pizza! We do pizza night once a week - it's pizza and a movie night (we eat the pizza parked in front of the TV watching a movie).

The hardest part is really outside of the house. One thing we do to help make it easier is replace with better. It's actually one of Danna Korn's strategies. The basic idea is that you one up the gluten item. So you replace a gluten item with something a little better in a gluten free variety. School book awards were tough for my son. If they read so many books they get a coupon for pizza hut. Well it bummed him out a little until I started trading him a Lego set for a pizza coupon. :rolleyes:

The treat bag at school is really important. At least at our school food seems to always cropping up. Many of us have sent a bag of goodies to school for "emergencies." Also try to get a list of the other kids' birthdays from the teacher and send in a treat on those days. And let your son pick the treat - my son's favs are Reese's PB cups, choc chip cookies, crispy rice cereal treats (you can buy a gluten free version of rice krispies that tastes just like Kellogg's), brownies, and cake.

This is NOT the end of the world. Your son will be more than fine. He'll be terrific! Just give yourself a little time to learn and realize that the first few weeks/month are the hardest. After that it gets so much easier. Like anything new, it takes a little practice and patience but you'll get it.

Welcome to the club!!

purple Community Regular

My favorites:

Chocolate cake: Open Original Shared Link

So good you don't need frosting

Waffles: Open Original Shared Link

Wonderful plain, pop in the toaster to reheat.

White bread: Open Original Shared Link

Cut it into 4 squares then turn them on end and slice with a thin knife to get 8 slices. I just tried it today and its easy and tastes really great.

Also check out the thread on here called "Food Ideas"

dreamindarlin Rookie

I've seen a few people say mac n cheese in a thermos? Can someone post a recipe? I know I will have to get the gluten free noodles....what else?

You guys are great!

CeliacMom2008 Enthusiast

Mac & Cheese - Some here use the packets out of regular Kraft Mac & Cheese blue box (I'd make sure it's sealed well before you open it (so you know nothing got in) and wipe off the package a little before you open it. Also, some places sell just the cheese (I think it's in the popcorn section as they sell it as a popcorn topping). I've not tried either.

We've made homemade once with velveeta - I think I followed a recipe on the box and just used gluten-free pasta.

There's a box (similar shape to Kraft blue box) of a similar type product by Annie's I think (it has a bunny on the front if I remember correctly). We personally didn't care for it much, but I know others here like it.

Mac & cheese is my personal lazy meal - I buy Amy's frozen mac & cheese (be sure to get their gluten-free variety, not their organic variety (which is gluten noodles)). I use it for those time crunch times. I micro it in the morning and put it in a thermos.

My son also likes noodles and Betrolli's alfredo sauce (not exactly mac & cheese, but kind of...). Bertolli's is a regular brand of sauce. I noticed last time I bought some that there were some cheese sauces now at our grocer in the same section (spaghetti sauce). I didn't check the labels, but they might be another source for the cheese part of mac & cheese.

All this assumes you aren't trying dairy free. Our ped GI told us to hold off on trying dairy free to see if it was necessary. We did end up trying it after about 3 months for about 6 weeks, but I don't think his issues had anything to do with dairy. But that's a whole nother topic!! :o

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      This may make you feel better about cross-contamination: https://nationalceliac.org/celiac-disease-questions/do-i-need-new-designated-pans-plates-and-utensils/ https://theceliacscene.com/rethinking-cross-contamination-no-need-to-be-so-careful/ I use Tom's of Maine or a toothpaste that states it's gluten free.  I have allergic reactions to some toothpastes so some of the toothpastes in health food stores are usually safer for me. They're typically gluten free as well. Spices can contain cross-contamination from gluten.  There are a few lists online of spices that are safe for celiacs.  I also grow my own herbs and use them in place of store bought when I can.  I think Badia lists their spices as gluten free and Spice Lab has some gluten free too. Knitty Kitty has a great point about nutritional deficiencies and B vitamins.  I got a lot of aches and pains when I got off gluten.  I tried to replace wheat with other healthy grains like teff, buckwheat and sorghum.  Limiting one's diet too much and not getting enough vitamins, can make someone feel worse.  A lot of the gluten free foods in the stores are made with lower quality ingredients than the wheat varieties.  I try to replace all my foods with homemade options.  Then I know the quality of the ingredients and which vitamins I may be high or low in.  Probiotics or prebiotics can help with bathroom issues.  Better to get them in foods if possible and not pill form.  My doctors keep recommending magnesium too.  It's not supposed to be taken alone, but they don't seem to care about that.  It's easy for vitamin D to be low too.  That was another thing doctors told me to take.  Unfortunately, they didn't monitor it and it went too high.  Again, better from natural sources like food and sunlight.  However, supplementing can help if you're not getting enough.  Some sources say to take D with K2.  You may want to have iodine levels checked.  If you add iodine, make sure to get sufficient selenium for thyroid.  You can get iodine naturally in most seaweed.  Nori may also be one of the few non-animal sources for B12.  Brazil nuts are a good source of selenium and you only need a few a day to meet RDA.  Some brands of nuts specifically say gluten free.  Unfortunately, there are issues with Brazil nut production and they're much harder to find this year. The more you can vary your diet the better.  One study said aim for at least 30 different foods in a week.  You might want to try kiwi fruit.  There were some studies that said eating kiwi improved mood.  It also has a covering which most people don't eat, so that should protect what's inside from contamination. I've limited my diet quite a bit over the years because of migraines, so I know how uncomfortable it can be finding safe foods.  However, I'm afraid limiting diets like that may actually be causing more harm than good.  It's something I'm trying to work on.  I keep trying to expand the number of foods I eat and my recipe repertoire.  I made a list of brands of foods that I've found that are gluten free so I have a guide when I'm shopping.  
    • knitty kitty
      Hello, @Dora77, I agree with you that your doctors aren't very knowledgeable about Celiac Disease.  My doctors didn't recognize nutritional deficiencies either.  I became very deficient in vitamins before I was diagnosed, so having experienced similar, I understand what a difficult time you're having.   Poor absorption of essential nutrients is caused by the damage done to the intestines by Celiac Disease.  The gluten free diet can be low in essential nutrients, so supplementing to boost your absorption is beneficial.  New symptoms can develop or worsen as one becomes more and more deficient.   There's eight essential B vitamins that our bodies cannot make, so they must come from our food and supplements.  These eight B vitamins work together, like instruments in an orchestra.  They need to be supplemented together with essential minerals like magnesium.   Deficiencies in the B vitamins can have overlapping symptoms.  Some symptoms can be traced to specific B vitamins.  OCD can be traced to low Pyridoxine Vitamin B 6.  Yes, I had OCD and washed my hands until my skin cracked and bled.  ADHD symptoms can be traced to low Thiamine Vitamin B 1.  ADHD is something one is born with.  People who are born with ADHD have a metabolic problem with getting sufficient thiamine into their brain cells.  People who develop symptoms of ADHD later in life are more likely to be low in Thiamine.  The same symptoms appear if one is not getting sufficient thiamine from the diet.  Yes, I developed symptoms of ADHD.  These symptoms improved and disappeared after supplementing with Thiamine and the other essential nutrients. I was diagnosed with Type Two Diabetes.  99% of diabetics of both types are deficient in Thiamine because our kidneys don't re-absorb thiamine properly.  Thiamine is needed to make insulin and digestive enzymes in the pancreas.  Poor digestion (floating, undigested stools) can result with insufficient pancreatic enzymes.  The gall bladder (upper right quadrant) needs thiamine to make and release bile which also helps with digestion.  Constipation is also a symptom of Thiamine and magnesium deficiencies.  The thyroid is another organ that uses lots of Thiamine, too.  Low thyroid hormones can be due to insufficient thiamine, selenium, iron, and iodine.  Swelling of hands, face and feet are also symptoms of thiamine insufficiency.   Our bodies use thiamine to make energy so organs and tissues can function.  Thiamine cannot be stored longer than three weeks.  If our stores are not replenished every day, we can run out of Thiamine quickly.  If we do get some thiamine from our diet, symptoms can wax and wane mysteriously, because a twenty percent increase in dietary thiamine causes an eighty percent improvement in brain function and symptoms.  Thiamine interacts with all the other vitamins in some way.  Many other vitamins and their metabolic processes won't work without thiamine.  In Celiac Disease you are apt to be low in all the essential nutrients, not just thiamine, but thiamine deficiency symptoms may appear first. Talk to your dietician about eating a nutritionally dense gluten free diet.  Keep in mind that processed gluten free foods do not contain sufficient vitamins to be useful.  Processed gluten free foods are filled with saturated fats and excess fiber (that could explain your constipation).  Dairy products, milk and cheese can cause problems because Casein, the protein in dairy, causes the same autoimmune reaction that gluten does in some.  Your current restricted diet is dangerous to your health.  I followed the Autoimmune Protocol Diet (Dr. Sarah Ballantyne).  It's a Paleo diet that promotes intestinal healing.   Discuss with your doctors about correcting nutritional deficiencies as soon as possible.   Interesting reading... https://pubmed.ncbi.nlm.nih.gov/34165060/ https://pubmed.ncbi.nlm.nih.gov/21816221/#:~:text=Lipid-soluble thiamin precursors can,and attention deficit%2Fhyperactivity disorder.
    • max it
    • cristiana
      My chest pain has been caused by costochondritis, as well as times when iron supplements has given me such bad bloating it has put pressure on my back and chest, and reflux can do the same. Also, along the lines of Wheatwacked's suggestion above, is it possible you had an injury to your chest/ribs way back that is being set off by either some sort of gastrointestinal bloating/discomfort? I distinctly remember really hurting a rib over forty years ago when I misjudged a wall and thought it was just behind me but in fact it wasn't.  I fell badly against the wall and I think I cracked a rib then.  For some strange reason I didn't tell anyone but I think had I gone to hospital an X-ray would have revealed a fracture. I think that rib has not been right since and I am sure that bloating makes it worse, as well as heavy lifting.
    • Dora77
      Sorry for the long post. I’m 18, and I was diagnosed with celiac disease and type 1 diabetes (T1D). My transglutaminase IgA was >128 U/mL, EMA IgA positive twice, and I’m HLA-DQ2 and DQ8 positive. I’ve been completely asymptomatic since diagnosis, even when I cheated with gluten sometimes in the past and used to eat out(2-5 years ago) I don’t get the typical celiac reactions, which makes it really hard to know when (or if) I’ve been glutened. But for the past year, I’ve been the most strict with my diet, and that’s also when a bunch of new issues started. I eat completely glutenfree, never eat out, dont eat food that says „may contain gluten“.   Current Health Problems • Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds. Been ongoing for a year now. First noticed in the gym. • Abdominal bulge on the right side, not painful but seems to be getting slightly bigger. Doctor didn’t find a hernia on ultrasound, but it was done lying down (I’ve read those can miss hernias). Noticed it like 6 months ago, couldve been there longer. • extremely dry and mildly swollen hands (this started before I started excessive hand-washing), and bloated face. • Signs of inattentive ADHD (noticed over the past 3 years), now combined with severe OCD focused on contamination and cross-contact. • Growth/puberty seemed to started after going gluten-free. Before that I was not developing. Dont know if any of these are because of celiac as my dad doesnt have those and he is a lot less strict gluten-free then me. I also had pancreatic elastase tested four times: values were 46 (very low), 236, 158, and 306 (normal). Gastroenterologist said one normal value is enough and I don’t have EPI. Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon.   Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. My dad, who also has celiac but doesn’t care about CC, buys fruits, and he might’ve picked them up right after handling gluten bread. That makes me feel unsafe eating them. Even fruit at stores or markets feels risky because so many people with gluten on their hands touch them.   My Home Situation (Shared Kitchen) We’re a family of 5. Only my dad and I have celiac. He eats glutenfree but doesn’t care about CC and sometimes (but rarely) cheats. My mom and siblings eat gluten bread at every meal. My mom is honest (so if i ask her to be cautious, she most likely would try to), but doesn’t seem to understand how serious celiac is. She: • Stopped using gluten flour • only cooks gluten-free meals (but they still heat up gluten bread and also cook gluten noodles) • Keeps separate butter/jam/jars for me • Bought me a stainless steel pan Bu we didn’t replace old wooden utensils, cutting boards, or other pans. The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
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