angieInCA

I'm a gainer. I was 50 lbs overweight at diagnosis. First Dr. told me I couldn't have celiac disease because I was overweight. New GI told me after looking at all my symptoms that he was 99% sure I had celiac disease but I had already stared eating gluten lite and had a very weak positive. I tested positive for DH so I opted not to have the endoscopy, didn't see the need for the time or expense.

I'm 48, was misdiagnosed for 47 years. Gluten free for 7 months and feel better than I ever have in my life.

Thank you so much for your responses! I took out the 3 T and it helped. I have since tried a new recipe AND taken out 1/2 C + 2 T of the liquid AND I HAVE REAL BREAD! WOOO WHOOO! It is amazingly soft and has the consistency of soft white bread. My daughter and I were so excited and my husband and son are actually eating it also.

Must share Recipe it's required when you have found success

Have you had your sugar levels checked. You could be Hypoglycemic and it is setting off what you believe are cravings but is really low blood sugar.

I have Reactive Hypoglycemia which I've had all my life but really came to the surface when I went gluten-free and started substituting all the higher carb flours and such. The cravings were terrible and my blood sugar was on a rollercoaster. To keep this in check I really have to balance low carbs with protien at each and every meal or snack.

I have had to cut out all flours, grains (including corn and peas), and sugar (only honey is allowed), already off dairy because of intollerence so no ice cream for me. I've been on this new diet for 4 weeks and after about 4 days all the cravings stopped. Now when I want something sweet it's and apple with peanutbutter or a banana. The only time I have had cravings is when I accidently got glutened and boy it was a rough 4 days but I stuck it out and everything calmed down.

Hi Matt and welcome.

I too had the left side pain but it was a bit lower, just a souple of fingers south of the belly button to the left. It's still there after 7 months of gluten-free diet but it's slowly going away as time goes on. When I get glutened it does flare up for a couple of days.

As said before, this site is a wealth of information. I think I spent my first 3 weeks just reading old threads and posts to try to get as much information as possible. I know at first it's confusing and scary but please come here and ask questions. There are some really great people on here willing to help and listen when the going gets rough. Remember you will go through the 7 stages of Grief ( I know I did). Be aware of that and allow it to happen, just don't get caught up in dwelling on it.

Following the gluten-free diet has it's challenges but I think you will see the rewards very quickly. I found relief for things I didn't even realize were related to ingesting gluten. I'm 48 years old. I was misdiagnosed for 47 years 9 months and 18 days. I feel better now than ever in my life.

I'm very interested in participating in this thread but I see that it's almost 2 years old and no one has posted in almost a month. Am I too late or do we need to start a new thread?

I was a Celiac Gainer, meaning I gained 50 lbs over 5 years till I was properly diagnosed. The weight gain has stopped since being gluten-free but I really need to get the weight off.

Right now I am grain, dairy and sugar free and you would think the weight would be pouring off of me but the fat is being stubborn and staying put.

Would love to be part of a support group but as we all know, being a Celiac, each of our situations are different and conventional advise or support really doesn't work. I'm hoping to connect with a few of you on here and hopefully we can support each other.

Today: 183lbs.

I have asked 3 different doctors about my tongue swelling (it is doing it more frequently) and all of them have said to drink more water and to pay attention to a possible food allergy.

Today I saw my endocrinologist and asked her what could possibly cause it. She asked to see my tongue then immediately said "It's a B12 deficiency." I got a B12 shot in the office. She said a deficiency in B12 would cause swelling and ruffling of the edges, a very commin side effect.

My question is why does it seem Doctors know so little? Three either didn't care to think or really didn't know I don't ask them to be God's but I wish they would pay a bit more attention.

Yes, and I do every 56 days

About a month into being Gluten and Dairy Free I realized I wasn't getting accidently glutened and there must be another issue. For me it was Soy. Soy affects me the same way gluten does as far a cramps, bloating, and the Big D. So my next elimination was soy. Also, did you use milk and butter in your mashed potatos. I had to remove dairy immedately into the diet.

At 10 days you are still new at this but it sounds like you've got the searching for hidden gluten down. You may find that for a while till your gut heals that you will have to remove some other foods that are hard for your system to digest.

Since I have had to cut out all grains and milk I am having a breakfest of sauted diced onions, peppers, tomatoes and ham mixed with scrambled egs. I dice up enough onions, peppers and tomatoes for the week and keep them in a small container in the frig and just spoon out what I need every day. I add a piece of fresh fruit or berries on the side and coffee. Quite tasty and very filling.

And creamy - anything creamy - but I'm having trouble with dairy, too. What I wouldn't give for a bowl of cereal! Sometimes it's just hard to feel satisfied on meat and veggies and a little fruit.

I dreamed about a bowl of frosted shredded wheat last night

Thanks for understanding and feeling my Whine

I just have to whine for a bit so please bear with me. On top of having celiac disease I also have a problem with reactive hypoglycemia.

2 weeks ago I saw my Nutritionist and G.I. to discuss some on going sensitivities I have been having. I have figured out that I can't handle Soy or Corn and I'm already off dairy and now I'm suspecting rice. So it was decided that along with the soy, corn and dairy I should remove all grains, any processed sugar (honey is allowed) and peas from my diet.. Basically to remove all processed foods except for peanutbutter (thankfully I didn't have to give up my peanutbutter) Thank God I love veggies and fruit and I know how to cook.

The new Diet really isn't the problem, up untill Monday I had been doing really well and wasn't craving a thing. Tuesday I got glutened accidently by some stray crumbs where someone in my house used my peanutbutter and when I had my daily apple and peanutbutter I didn't notice the crumbs untill too late.

Ever since I have been on the worst rollercoaster of agony and cravings. All of my muscles are cramping up (my arms hurt so bad I can barely lift them), I have had a non-stop migraine, brain fog, and the big D. On top of that I am having massive cravings for all the forbidden foods. It's driving me crazy. I could kill for a Double Quarter Pounder with Cheese and I HATE McDonalds! On the way home from the store today (had to get a fresh jar of peanutbutter) I had to force myself not to stop at the local donut shop for one or half a dozen of their fabulous Bavarian cream filled chocolate dipped donuts. I have never been a person focused on food but now that I have to think about it every day all day long, because I feel like I have to constantly be thinking about what my next meal will be and monitoting my blood sugar so it's not too low, I now feel like all I do is think about food. I'm becoming so sick and tired of eggs and chicken and tuna. Up until now I've been really positive and have not thought about what food I can't have.

Please excuse the rant. I know there are others dealing with much bigger issues than this but today has been a tough day

Red Wine is usually my drink of choice and have been told by my Dr. to have 1 (4oz) glass a day for it's advantages. I also drink tequila (margaritas) and vodka (with tonic and a twist of lime) on occasion. I was never big on beer except for Guinness but I really do like Redbridge and keep it around for when a cold beer is appropriate

your rash looks very much like my rsh on my forearms and shins. So yes, it very well could be DH.

EDIT: Is weight gain a symptom? My doctor tells me that im fine because im not losing weight, im actually gaining it...for no explainable reason, ive suddenly been gaining weight, ive put on 3.5kg in 4 months and I have no idea why...so, ive started to really watch what I eat - especially the amount of sugar i eat. I can tell ive put on weight, im the biggest ive ever been, im about 6-7kg bigger than what I would like...hmmm.

Yes, Yes, Yes! Try 50 lbs unexplained. My GI told me that weight gain is just as great a symptom as weight loss. The first person he ever diagnosed weighed over 300 lbs and had been putting on weight for 5 years with out explanation.

Wheather or not the hypoglocemia will go away will depend on what causes it for you. I do not respond to simple carbs well especialy if not balanced with protein. Mine has actually gotten worse since going gluten free. I am currently working with a dietitian and an endocrinologist to try to get my blood sugar stabilized. For some reason my pancreas misfires and releases insulin at the wrong times. It might be related to celiac disease and then it might not.

Ironically my cortisol levels were fine but of course my Vit D and B's were through the floor. About 2 weeks after starting supplements I started to realize I was actually feeling some energy in the afternoons.

I think you have to really experiment to find the golden combination of what your body needs and what works for you. I'm still working on mine

I would also like to know how long until the hypoglycemia goes away completely?

Have you had a glucose sensitivity test to see if you truly are hypoglycemic. Hypoglycemia is a disorder that you will have to treat with proper diet as well and depending on the cause it will probably never go away.

I agree with everything mamaw just said.

My Dr. actually told me I would probably go through the 7 stages of grief and I am, but every day I tell myself I am so thankful that it was ONLY Celiac Disease and I can heal myself with food. I really thought it was going to be so much worse especially when my previous Dr. started talking to me about removing bowel sections and getting my affairs in order. It really put things in perspective and I refuse to sit on my Pitty Pot.

Since going Gluten Free in Oct, I have been Migraine free for the first time in 30 years.

I had been suffering with lower back and left hip pain for about 3 years before going Gluten Free.

After many MRI's and X-Ray's my Dr's could find no reason for the pain and thought that I might have small Synovial Cysts in the spine and hip joint. I was told the only cure would be to operate and they wouldn't even consider it till the pain was so bad that I could no longer walk. I was told I would probably end up in a wheel chair by the time I was 55. The pain had gotten so bad that the only sleep I was getting was by chemical assistance and I was living on anti-inflammatories just to be able to function through the day.

In Oct. I went gluten-free and within 3 weeks my hips and back were pain free. My Dr's were astounded. One still doesn't believe it was the Gluten causing the problems

Now when I get Glutened the pain comes back with-in 24 hours and stays with me for a couple of days.

I also had pain in my hands and feet which has now disappeared but re-occures when Glutened.

My Doctor told me that my DH diagnosis meant I had celiac disease even though all my blood tests were negative or very low. I opted not to have a biopsy, I know that after being gluten-free for several months I can reverse the damage to my intestinss. I have had other tests to check for complications due to unchecked celiac disease for 47 years and speaking of which I will be having a colonoscopy next Thursday. Over the past 2 months I have been having a slew of tests to see what the status of my body and health is but I opted to stop testing for the one thing I already knew I had.

I really like Red Bridge.

Now to tell you the truth I never really liked American "Clear" Beer. All tasted like &*$$ water to me. I was a Guinness Drinker, the darker and heartier the beer the happier I was.

My last birthday before my diagnosis My Husband got me a Beautiful Crystal Goblet engraved with Guinness on one side and my name on the other. I now pour my Redbridge in it

I really don't drink that much beer but I really enjoy my red wines

The water to rice ratio was right but it sounds like one of two things happened, 1) you just didn't cook it in the crock pot long enough or 2) your crock pot is not getting hot enough. On high your food should have been at a slow boil. Check the type of rice you had. Long grain white rice just takes 15 min on simmer to cook but all others take longer.

My favorite snack is an apple sliced up with peanut butter spread on it. yummy! satisfies sweet, crunchy, salty and creamy. Funny thing is this was my favorite snack before I went gluten free too, so I did't lose my favorite

Chicken and rice (white or brown) is one of those wonderful foods that are very forgiving and usually blends well with just about anything you add to it. I experiment all the time and sometimes it's "What do I have in my Pantry that might taste good?"

I think what you posted should blend well together and taste great.

I have battled weight gain for the past 10 years. It came on slowly at first and then over the past 5 years I have put on close to 60 lbs. I have always had a very healthy diet and very active so the weight gain never made sense and nothing I did made a differance. My first Dr. told me I couldn't have celiac disease because I was over weight.

My new Dr. told me that was an "Old Wives Tale" and that there are probably more people who have celiac disease that are over weight and not getting proper testing and treatment because of that. My new Dr. told me the very first patient he ever diagosed weighed 302lb. So, yes, you can be over weight and have celiac disease.

Since going Gluten Free I have lost about 5lbs. but the biggest differance is the bloated look. My face, hands and the rest of my body has lost that "would explode if pricked with a pin" look. I am looking forward to slowly losing the weight in a very healthy manner.

Almond flour makes great baked crackers and I don't see where it would be bad to digest raw. Coconut flour might be a good one to add to the mix, Flax seed mill would be fine raw and Potato Starch is actually already cooked so you could use that. I think everything else would be very hard to digest in the raw form.