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[Courtney2237]

Hi there,

I'm new to this forum (actually it's the first forum I've ever joined) & I'm looking for some much needed advice/reassurance. I haven't felt right for several months but always just carried on like most busy Moms do until I noticed that I was losing quite a bit of weight. I've always been slim so to speak but have also always had a healthy appetite. Over the past 3 months, I have lost at least 20 pounds even though my diet hasn't changed..bringing me under 100lbs.  I have also been having loose & floating bowel movements a few times a day. I have bad hip & lower back pain on the left side but no abdominal cramps/pain. I went to the hospital & nothing showed on my blood work or ultrasound. They agreed to do an endoscopy & colonoscopy with biopsies of my bowel ~ I'm waiting on results. One of the residents asked if I've ever heard of Celiac disease & to think about going gluten free. I of course researched it as soon as I got home, but from what I've read most people have bad stomach cramps/pain. My main concern right now is this dramatic weight loss...I look & feel terrible. Has anyone else experienced something similar? Feeling very alone & scared. 

Courtney 

[Irene Joanne]

Too bad your endoscopy was done already- unless they did do biopsies for celiac? Many many people with celiac do not have the cramps and stomach pain- I didn't, until after being diagnosed and then gluten free for a while. Now gluten causes much worse symptoms for me. 

It would be very worth while to get the celiac blood work done- don't cut out gluten until blood work is done and hopefully a endoscopy with biopsies to test for celiac. 

[Courtney2237]

Hi Irene,

thanks so much for your response. The GI specialist did do a biopsy for Celiac. I also had blood work to test for Celiac antibodies but they said it takes a few weeks to get the blood work back...does that sound right? Also, did you have any weight loss prior to being diagnosed? 

Thanks again,

Courtney 

[Irene Joanne]

That makes sense. So glad you had the testing done! You didn't get any info after the endoscopy? I was told right after that it looked like celiac and to start the diet. 

I didn't have weight loss- but not everyone does. It can't hurt at all now for you to go gluten free. You wouldn't have to wait for results to see if it makes a difference. At least do some research and enjoy some of the gluten filled goodies you'll miss the most if you are diagnosed with celiac. 

 

[squirmingitch]

I had weight loss prior to dx. I take it you are small like I am. I was always 103 & too skinny but never could gain & prior to dx I had fallen off steadily to 100, then 99 then rapidly until I was 91 lbs. 

[Courtney2237]

Yes! I have always been skinny too. Never had a problem maintaining though. So this crazy weight loss has really thrown me for a loop! How long did it take you to start gaining again? Please tell me things get better...

[GFinDC]

Hi Courtney,

I suggest you wait for the test results before going gluten-free.  Some members reported their doctors lost the test results or the lab screwed up and they had to retake the tests.  It's unusual but it does happen.  Stopping gluten and then restarting it for testing can be very unpleasant.   Your body starts to heal and BAM you hit with a poison pill.  Not fun.

Recovery can vary a lot.  Some people feel better within a few days and others it takes weeks or months.  Some thing you can do now are cutting out dairy and carbohydrates and sugars.  Those won't affect your celiac testing but removing them may reduce your symptoms.

Peppermint tea is helpful for gas, if you have that.

For me it took about 6 weeks before my gut spasms stopped after going gluten-free.  But recovery took much longer than that.   Like I said though, it varies an awful lot among people.

 

[dharwood]

Irene,

 This too is my first post. I am very new to this site and disease, so I won't have much advice for you, but I can tell you that this Forum has been the best thing I've found. Check it often and like it on Facebook. (Thats where I seen your post) Other than the weight loss concern, you've described my symptoms perfectly. I have lost weight, but only about 10-15 pounds over a 3 month period. I was positive on a blood test last month but had been feeling horrible for several months. No stomach symptoms other than very frequent diarrhea, but my lower back and right hip were very painful, and the anxiety/depression was hitting me too. My RA numbers were very high also, so I am seeing a rheumatologist on Monday. I have been gluten free since 10 May, and have made some improvements. My back started feeling better very quick, but has came back a little in the last 3 days and my hip still bothers me, although not as much. BM's are pretty much back to normal too.  What I find frustrating is that I have stomach cramping now that I have started going gluten free. It is a very daunting and overwhelming experience I must say. When I read this forum and realized how many things contain gluten, my head spins. But there is a wealth of knowledge on here. 

 It sounds like you are on the right track, and I wish you well. I am lucky, in that my wife is very supportive and has been my rock, cause I will tell you I have been a handful over the last months. I do believe you will find things get better. Good luck! 

[Courtney2237]

Thanks GFINDC. I didn't know about cutting out dairy...is that for Celiac or just in case of a lactose intolerance? 

[squirmingitch]

GFINDC has good info. for you & I echo the no cutting gluten until all test results are in. Too many times people have cut it too early & ended up screwing themselves.

Things get better!!!! Everyone is individual so recovery is individual. Don't base your weight gain time on MY weight gain time okay? So happens that it took me a LONG time to gain again. I went gluten-free Dec. of 2011 & I have yet to see 103 lbs. again. I have gotten up to 101 lbs. BUT at the moment I'm down again to 96 lbs. This is because I got cross contaminated. I drop weight ultra quick (as I have discovered) when I get cc'd. Then it takes me a long time to re-gain. 

[Courtney2237]

Thanks for sharing Dharwood. Sounds like we have had similar symptoms...hope you continue to feel better each day. I am also lucky to have a great support system ~ we have 3 children (7, 4 & 1) & my husband has been amazing trying to keep things together while also taking care of me. Hope things turn around soon though...he's a terrible housekeeper. Lol

[Gemini]

I do have one thing to add to this already great thread of help for Courtney.....I know some of you advise no carbs or sugar or dairy in the beginning but when some of us have dramatic weight loss, they will need the carbs to stabilize their weight.  I was not absorbing much of anything at diagnosis and weighed 92-94 pounds, which was 20 pounds underweight. I ate gluten-free bread and surprisingly...had no issues with it. I did eat some gluten-free brownies and cookies a few times a week just to gain weight as fast as possible because I was really de-stabilized. My dairy issue didn't rear it's ugly head until 2 YEARS into the gluten-free diet. Kind of odd but I still have to eat dairy lite....which isn't an issue because dairy isn't something you want to eat a lot of anyway, regardless of whether you have Celiac or not.

I always advise the newbies with serious weight loss to try bread in the beginning.....toast. If it bothers you, then stop. Same with dairy and sugar but keep the goodies to a minimum. You also can't really delve into healthy fats in the beginning because they will not be absorbed and can cause diarrhea. Try to eat every couple of hours in smaller meals or snacks.....don't overload your gut.  Most importantly.....digestive enzymes!  They will help with digestion until the small intestine heals more.

[Irene Joanne]

Sorry if my advice about cutting out gluten right away was bad advice- I am new to my celiac diagnose and never thought of something maybe going wrong and you needing tests redone. I just want you to feel better asap. Take care and let us know! 

[Gemini]

18 minutes ago, Courtney2237 said:

Thanks for sharing Dharwood. Sounds like we have had similar symptoms...hope you continue to feel better each day. I am also lucky to have a great support system ~ we have 3 children (7, 4 & 1) & my husband has been amazing trying to keep things together while also taking care of me. Hope things turn around soon though...he's a terrible housekeeper. Lol

You know, Courtney.......you have a great sense of humor!  That last line really made me laugh! 

[squirmingitch]

And one thing that will be perhaps your biggest ally in this disease is a sense of humor!!!!! If you can laugh about it you're half way there!

I will echo what Gemini said about carbs. I needed carbs!!! I STILL need carbs!!!! Mucho carbs! I chucked down the carbs like there was no tomorrow, actually I still chuck down the carbs. If I cut carb intake down, I would wither away & blow away in a light breeze. I didn't really have any problem with eating fats right from the get go but then I did not have the big "D" like so many. So, as long as I could/can handle the fat, I eat the fat. I suck the fat on a steak like it's manna from heaven. LOL! Remember though that we are all individuals so we have different reactions. I may not have been absorbing the fat but I sure was eating it. I did a lot of fats by way of nut butters & such too.

I have always eaten every couple of hours even pre-dx and I continue doing that. I have a friend who compares me to a hummingbird in that respect. I think her analogy is correct. If I don't fuel up on a regular basis then I wind down like a cheap watch. I suppose I'll be that way until I die.

[RMJ]

To answer about dairy:  Celiac disease can damage the part of the villi in the intestine that make lactase, an enzyme that breaks down the lactose in dairy products.  When lactose isn't broken down it can cause digestive disturbances.  You can try eliminating it to see if you feel better.  Eliminating it will not affect future celiac testing. 

[Courtney2237]

??

[Gemini]

On 6/17/2016 at 6:31 PM, squirmingitch said:

And one thing that will be perhaps your biggest ally in this disease is a sense of humor!!!!! If you can laugh about it you're half way there!

I will echo what Gemini said about carbs. I needed carbs!!! I STILL need carbs!!!! Mucho carbs! I chucked down the carbs like there was no tomorrow, actually I still chuck down the carbs. If I cut carb intake down, I would wither away & blow away in a light breeze. I didn't really have any problem with eating fats right from the get go but then I did not have the big "D" like so many. So, as long as I could/can handle the fat, I eat the fat. I suck the fat on a steak like it's manna from heaven. LOL! Remember though that we are all individuals so we have different reactions. I may not have been absorbing the fat but I sure was eating it. I did a lot of fats by way of nut butters & such too.

I have always eaten every couple of hours even pre-dx and I continue doing that. I have a friend who compares me to a hummingbird in that respect. I think her analogy is correct. If I don't fuel up on a regular basis then I wind down like a cheap watch. I suppose I'll be that way until I die.

Yup...I know the feeling.  Since I started working out to combat the osteoporosis, I eat sandwiches as snacks...LOL! I lose weight very quickly but a lot of that is due to the weight training.  I am telling all those who want to lose weight and keep it off?  Weight train.  Once you have more lean muscle as opposed to fat, you burn calories like a trooper. Eating more small meals as opposed to larger ones helps also.  You will use the calories instead of storing them. I do like healthy carbs though and don't feel right if I don't eat them......no energy.

I agree about the fats. It was a delicate balance, in the beginning.  I had to watch amounts because a little too much in one day and I would have problems.  That will go away the more you heal. 

[Courtney2237]

Ok so I had my colonoscopy & endoscopy last Thursday. Don't get results until July 13th as GI is on vacation. I've had bad pain in my lower left abdomen that wraps around to my lower back as well for the past 4 days..even hurts to touch lightly. Went back to the ER & they did an ultrasound & CT scan. The Doctor said that I have "prominent" lymph nodes in the area that is painful as well as thickening & inflammation of my Sigmond colon? Um ok what is that all about? Kind of freaking out over the whole swollen lymph nodes thing. Has anyone ever dealt with this before? ?

[Jmg]

I had left sided lower back pain for many years prior to excluding gluten. I also got very severe left sided chest pains. lymph nodes under my arms and in neck were often swollen.

After I excluded gluten all of the above largely resolved. I had zero clue that any of the above were food mediated or even connected. 

And just as an aside I am also skinny and could magically eat whatever in whatever quantities without putting on weight.

Good luck, try not to worry (I know, but do try) and even if tests are negative do consider trialling gluten free once the testing process ifs definitely over. I did and it was life changing.

[GFinDC]

Hi Courtney,

You asked about dairy, and RMJ got it right.  Celiac disease destroys the villi lining of the small intestine.  Those villi make the lactase enzyme we need to digest dairy.

Sigmoid colon thickening could be related to diverticulitis.  Which according to Wiki is a fairly common condition but doesn't always cause symptoms.  Diverticulitis can cause a problem if there is an infection though.  The sigmoid colon is part of the large intestine.  Celiac disease affects the small intestine, so celiac isn't likely involved.  I am not sure why the resident suggested celiac, unless there were some other reason to do so.  Possibly the weight loss, which could be explained by celiac disease.  Thickening of the colon may happen with Crohn's disease also.  And I'm not sure about UCD (ulcerative colitis disease) but it might cause that also, not sure

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