nvsmom

I used to have stomache aches in the morning after my breakfast; I thought it was the coffee or sugary syrup on my waffles... turns out it was the waffles.  I would stop with toast for breakfast if I was you. It could be non-celiac gluten intolerance (NCGI) or they missed the damaged parts in the biopsy.

Like shadowicewolf sugested, I would try the gluten-free diet for at least 3 months before you rule out gluten as a cause.

... My boys tested negative for celiac but 2/3 has seen their health improve after going gluten-free. Don't rule it out yet.

I've had a LOT of sciatic pain over the last 10 years with bulging discs. Eventually one of my discs burst and pinched off and killed the sciatic nerve that was causing me the most problems. It caused some paralysis down my leg right to my big tow... on the bright side, it doesn't hurt anymore in that spot. LOL

I do wonder sometimes if the sciatica was aggravated by the inflammation caused by untreated celiac disease. I still get a sore and stiff back now, 6 months into the gluten-free diet, but I'm guessing there's been too much damage done for just a diet change to fix me at this point.

It's more of a head shaker for me. Just like my uncle who had lung cancer and still smokes, and a diabetic friend who eats a bunch of sweets.... Just not smart... and it makes them seem...weak to me.

Yeah, I agree with the others that your doctor's logic is faulty.  If he is doing an endoscopy to find out what is bothering you NOW (nausea), then why would he want you to eat gluten which hasn't been a factor in your life for a year and a half?? If you ate gluten, it could cause more damage and mask any other problems that are going on.... I think you are right to skip the gluten challenge.   Good luck with it; I hope you find dome answers.

If you are comfortable going gluten-free without a celiac diagnosis, i say go for it. I have half a dozen friends who are gluten-free due to non-celiac gluten intolerance and to treat other autoimmune problems.  They don't have a specific, doctor given diagnosis either but they sure do feel better now.

On the other hand, if you need a diagnosis for insurance or financial reasons, you might want to do the biopsy.  The biopsy might also be helpful to determine if something else is the cause of your symptoms (which are the same as mine except for the gas).

I would do the biopsy as soon as you can if you decide that is the route to go.  The longer you wait, the more discomfort you have to endure while eating gluten.  I don't think you need to be eating gluten for sensitivity testing, but 'm not sure of that.

It's a very personal decision. I wish you the best in what ever you decide.

I recently saw someone posting about finding a gluten-free perogy recipe so I thought I'd post my aunt's recipe here.  I haven't tried it yet but it has been Ukranian approved!  Below is her dough recipe. You can fill with cheddar and potato or saurkraut or whatever you fancy.


Pyrogys  Dough    (Gluten Free)
( I batch dough makes 30 depending on thickness and size)\
(2^nd number is for double recipe or 60 )( full soup bowl of potatos)


¾ cup brown rice flour (I use Bob’s Red Mill as quite fine grind)
   1 ½ cup
¼ cup sweet rice flour (made from glutinous rice so stickier)
    ½ cup
½ cup tapioca starch
    1 cup
¼ cup potato starch
    ½ cup
½ tsp salt
    1 tsp
½ tsp baking powder
    1 tsp
1 tsp xanthum gum
    2 tsp
½ cup water
    Less than 1 cup
1 egg
    2 eggs
2 tsp oil
    4 tsp oil


Mix wet ingredients together, then add dry.  Knead for 2 minutes activating the xanthum gum.
Let sit for 15 to 30 minutes, then knead again for a bit until nice and elastic. No gluten is formed so dough will not be tough when cooked.  
Break into 2 or 3 lumps to roll out, covering rest as it will begin to dry.
Roll out with mixture of rice flour and cornstarch, being careful to move around and flour as it may stick easily to counter. Also lightly flour rolling pin.
Edges may begin to crack but are easy to patch.
(Extra flour on dough will require that you wet edges with water to get them to stick. Keep a cup of water nearby, dipping finger in to run across edge of dough.)

Cut into squares, having filling ready to go and pans covered with tea towels to lay finished pyrogys on as well to cover when made. Remix extra dough as it does not get tough, but cover to keep soft.
When filling with potato, do not over fill as this dough will not stretch. It may develop light cracks so we try to push it back together.
Boil soon after making as they will dry out. They take 4 to 5 minutes to be cooked as the rice flour takes more time to get soft. These pyrogys do not seem to explode when cooked.
Taste good served with butter fried onions.

I have only been gluten-free for 4 months, and I was only accidentally glutened in that first month. I didn't find my reaction to be much worse than it had been in the past when I wasnot gluten-free, but it was definitely much more noticeable than it had been.  I attribute that to the fact that the inflammation and symptoms were starting from a low level... let's rate it as a 2 on a scale of 1-10 for symptoms.  When I was glutened, I had a reaction of a 7; going from a 2 to a 7 was very noticeable.  When I was eating gluten all the time my body was in a constant state of inflammation which I would rate at a 5; so when I ate gluten and got a reaction of a 7 it wasn't such a change in symptoms to go from a 5 to a 7....

Does that make sense? LOL

Perhaps when I've been gluten-free longer I'll notice more severity in my reaction to gluten, but for now I would have to say my reactions are not worse than when I was undiagnosed.... But that's just me.  

(hugs) Welcome to the board.

It sounds like you need to be gluten-free, so I hope the withdrawl ends for you soon.  It took me about two weeks to go through it... I'm lucky my family didn't disown me.  

I slowly made my family gluten-free (we hs too btw), it took a couple of months.  I slowly introduced gluten-free foods they liked before I started taking away the gluten containing foods.  I did cut back on their overall flour consumption in the process.  It was tricky because my middle son is extremely picky (gags on fruit and veggies) and my oldest has mild aspergers and was very attached to a few of his foods.  We're now at the point where they actually prefer my homemade chicken nuggets and they snack on Chex rice cereal.

I mention this because the more you can make them gluten-free, the easier it will for you to prepare foods.  Also, celiac disease (if that's what you indeed have) has a genetic aspect to it so it could be affecting, or in the future affect, your children... And to be honest, gluten/wheat flours aren't good for anyone.

Best wishes.  I hope you feel well soon and find lots of support around here.  

I use it too.  In the past I have found it very helpful with reducing exercise induced inflammation... really helps reduce muscle soreness.

I try to avoid cc when ever possible. It doesn't take much for damage to be done even if there are no symptoms.  I would rather buy another brand which is not made in a facility with wheat (etc) than risk it.  As I see it, why take the risk (for the pleasure of the taste of a food) when I don't have to. I want my family to have the full benefit of the diet and cc will take that away.

... But that's just me.

Best wishes.

Your poor daughter.  

So you are not pursuing any more celiac testing? If that is the case, I suggest you go on the gluten-free diet together for a few months to see if it helps... it can't hurt, just causes a bit more hassle at the grocery store.

I recommend this because with hindsight, I know that I was celiac as a baby and child except that I had C with the stomach aches instead of D. My doctor said "she is one of those people who gets stomach aches after she eats". I was above the 90 percentile for height my entire childhood until grade 6 when I stopped growing; I was the tallest kid in my school at that point.  I looked like I was thriving but I had joint pain starting, stomach aches 1 or more times a day and headaches.  

If you give her calcium supplements, I wouldn't worry about not consuming dairy.  Dairy does have lots of calcium in it but it's actually not a very absorbable source.  Vegetables are a better source of calcium because your body takes it up much better from there; remember that a good portion of the world's population does not drink milk and their rates of osteoporosis are actually less than ours.

I think doctors forget they are dealing with real, live people. How insensitive!   Maybe she just didn't like the fact that you might be doing a better job of doctoring yourself than she is...

Good luck with the blood tests.

I am just not sure what the healthiest diet for them would be...  I mean nutrition wise you cannot even begin to compare multigrain whoe wheat bread to any
gluten free bread out there... And I just feel that I am limiting ther diet by that.  They have multiple food allergies already: dairy, fish, tree nuts so excluding wheat seems brutal (especially if unnecessary).  My oldest son also as asthma and is the shortest kid n a class...  I know thes all could point out to gluten, right?

I think the gluten-free buns I make my kids for lunch are healthier than whole wheat buns in the store... by far. I use a microwaveable bun recipe that I found on this board and modified:

Microwave gluten-free buns

• 2 Tbs brown rice flour
• 1 Tbs golden flax meal
• 3/4 Tbs coconut flour (substitute 1 Tbs almond flour if wish)
• 1/2 tsp baking soda
• 1/2 tsp sugar
• dash salt
• 1 egg
• dash cinnamon
• 1 tsp whey protein powder (not needed)

Grease small microwaveable (custard) dish. Beat egg. Add dry ingredients. Mix well. Scrape sides and smooth top. Microwave on high for 85-90 seconds.

The bun has more protein and fibre than your average slice of bread.  

Celiac can stunt growth. I stopped growing in grade six.  Luckily I have HUGE people in the family so I reached a good height before stopping suddenly.  I am worried about my eldest son's growth now... He too has mild asthma, allergies (like tree nuts), mild Aspergers and his growth is slowing; he used to be taller than average and now he is shorter than average. He's dropped about 50 percentiles in height.    I'm getting his thyroid and growth hormones checked, but I'm also cutting his gluten.  Conevience (wheat) foods aren't worth the chance that I'm stunting his growth by feeding him foods that don't agree with him.

Cutting out wheat, barley and rye is only cutting out three foods of thousands, that have been so genetically engineered that our great-grandparents wouldn't recognize them. It's not a huge loss.  For example, do you regularly feed your family leechee nuts, mahi mahi or sea greens?  That's three foods that are probably missing from your diet too... It's just that we have been so brainwashed to think wheat (and Milk) is essential to our diet by the government (who was swayed by the agricultural and dairy communities) that it's hard to let go of that idea. Dairy and agricultural lobbiests made the food pyramid as it is today... not science. We really don't need wheat, we're just so used to having it that we assume it's essential... KWIM?  

I still feel that way about milk. We eat so much dairy in cheese and yogurts that I'm having a hard time cutting it out of my diet, and my son's, even though we both get stomach issues from it.  I know I could live without it because drinking the milk from another animal is sort of weird if you stop to think about it (LOL), but I'm having a hard time adjusting my thinking to that way. It's just another way of thinking.

Anyway, I wish you well on the diet, and if you choose to put your family on the gluten-free diet(even as a trial) I hope you have good luck with it and get some clear answers.

I'm glad you got a diagnosis and I hope you are feeling better soon. I found my GI issues are now mostly sorted out after 3 months gluten-free.  I'm guessing you'll see a good improvement by Halloween.  

Buying gluten-free baked goods is expensive and I have cut back severely on that.  My family of 5 is now gluten-free, and I buy 1 loaf of Udi's bread and I bag of Udi's bagels a week and that's it.  We use this microwave bun recipe quite often (but use coconut flour instead of almond due to allergies) since it's fast, cheap and homemade. Bun recipe We will make pancakes from gluten-free mixes, but I substitute almost half of the mix for golden flax (for nutrition) and add whey protein powder, none of which is inexpensive.

The main dietary change for me was that I had to be more prepared.  I had to make sure I have Lara bars/protein bars or a bag of trail mix with me at all times in case we end up needing to eat while out of the house.  I now cook more so I have leftovers for lunch, and when I do eggs, I do a big egg bake with veggies,cheese or some meats which I can freeze and have ready to grab for a meal on the go.

Rice, quinoa, potatoes and yams are still there for starchy side dishes. Rice noodles cost about the same as regular noodles.  There is a lot you can have... it's just those name brand favourites that you might have to give up like KD (cheez whiz and rice noodles is just as fast), or canned Campbells mushroom soup. Once you get the gluteny staples out of the house and replaced (like soy, worchestershire sauce, teriyaki, and somemustards and barbque sauces) it gets simpler because you have a house full of foods you can eat.  

I can honestly say that after a couple of months, it has become relatively easy to throw together meals and lunches. The first while I was sad, and felt quite deprived, but I splurged on things like gluten-free yogurt covered pretzels, M&M's, and ice cream, and I'm now at the point where I am mostly just glad that I feel better. Hang in there.  I'm sure you'll get it, especially with a supportive fiance.

Best wishes.  I hope you feel well soon.

I too was recently diagnosed with celiac after a lifetime of discomfort, and I felt that bitterness that so much time was wasted. Knowing that I could have been healthier for decades, and that my other autoimmune diseases are linked or caused by this, was a hard pill to swallow. It's unfair, and I feel for you.

I'm not a religous person, but I like to quote my favourite fortune cookie: Acceptance is the key to happiness.  ...Eventually acceptance will come and you'll be able to move forward.

I wish you the best and a quick adjustment to this new way of regarding food. (hugs)