Rapid Weight Loss, Can It Be Celiac?

[binkman]

I have a whole long story, but it basically boils down to this: About three weeks ago I had some recurrent watery diarrhea with ruq pain, just under my right ribs. Both came on at the exact same time. Since then, I've not really had D, but somewhat abnormal and more frequent movements.

 

I've had multiple blood tests. The more common blood test markers, just to measure general health and condition, don't show anything abnormal, but I was referred to a GI who ran TTG and Endomysial IgA Titer (amongst other blood and stool tests if anyone is interested) in an effort to try and figure out the diarrhea.

 

TTG came out strongly positive at 130. IgA Titer was high at 320. She initially told me that "my celiac panel was completely normal". I basically balked, and found a second opinion with my GP. He confronted the GI doc, and she quickly changed her tune. I am scheduled for a complete upper and lower endoscopy in four days.

 

My biggest concern is the weight loss. I haven't felt myself for a few months and I've had a few episodes of real nausea at or just after meal times a few times since Christmas. I've had less energy since then, but especially in the last couple of months. But three weeks ago, when the ruq pain and D started, I really noticed a drop in energy. The D has basically stopped, and the ruq comes and goes with seemingly no pattern. I have no appetite but make it a point to try to eat as many calories as possible. I had been adding weight at 2k a day later last year, but now I have dropped from 174.5 to 163 pounds in 21 days! This is a big deal, I was dieting and exercising like mad for a couple of years a few years ago to get down from 235 to 165. I then spent most of the end of last year climbing back to 175 as a result of slipping away from my diet and exercise regimen. I remember how hard it was to lose weight on purpose, so losing all of this weight in three weeks is really scaring me.

 

Has anyone else experienced similar sudden weight loss and change in stools? I will know if its celiac or not for sure soon. I haven't had extensive blood tests, but TSH levels are normal. What could be causing the weight loss that I should be looking out for? I am afraid that I might have a more sinister cause underlying the weight loss. What should I be looking in to and ruling out at this point?

 

Other symptoms: twitching, tired, crampy legs which have come on in the last week. Suddenly really bad GERD in the last two days, so bad it sent me to the ER. I've read other people having similar symptoms, but not the sudden, severe weight loss.

[cyclinglady]

You sound normal for a celiac! Just keep eating gluten until testing is complete (endoscopy/biopsies). In these meantime, research our Newbie 101 thread under the "Coping" section. Learn about cross contamination. Create a plan that will insure healing and with that -- weight gain.

During the endoscopy your GI should test for SIBO as well.

Welcome to the forum!

[ravenwoodglass]

Welcome to the board,.

Make sure tht the doctor will take at least 5 or 6 biopsies and the biopsies need to be looked at un a lab and can be positive even if the doctor doesn't see anything visually.

That said with your blood test results you can be pretty certain that you have celiac. Your results were very high. Be sure to read the newbie thread as it will have a lot of info for you and feel free to ask any questions that you need to ask. 

I hope you recover quickly but it can take some time,. Do drop dairy for a bit until you are feeling better. You can drop that now as it won't impact your biopsy. That may help a bit.  Until your biopsy you will need to eat the equivelent of a couple slices of bread a day. You don't have to have more than that if you don't want to,. Glad you are getting in to have that done so soon. You can start the gluten-free diet as soon as the biopsy is done.

[nvsmom]

I agree.  With those test results, there is almost no chance at all that something other than celiac disease is the root problem.  I had the same two positive tests, with similar numbers, and I chose to skip the endoscopic biopsy because I was so sure (as was my doctor) that I had celiac disease; plus I know the endoscopy can miss a large enough minority of celiacs for me not to want to have my diagnosis confused for me.  LOL

 

Weight loss is a pretty common symptom of celiac disease.  Your intestinal villi, which absorb nutrients, are badly damaged right now.  Many celiacs end up with malnutrition and vitamin deficiencies because of this.  Once you go gluten-free it will probably take a few months for your body to stop producing autoantibodies and attacking itself.  Don't be surprised if you don't regain the weight in the first few months gluten-free.  It can take a year or so gluten-free for many celiacs to really start feeling better.

 

L-glutamine is a helpful supplement for promoting intestinal and muscle growth and recovery.  Once your biopsy is done you may want to try it for a few months.  It helps promote muscle growth with a faster recovery time so that won't hurt you while trying to regain your weight.  

 

Try to be patient. Celiac recovery time is a lot slower than most people realize.

 

Welcome to the board.

[binkman]

The only issue that I have is that I am STILL losing the weight! If this takes 2 months to even out, at this rate, I will have lost almost 40 pounds! I was 6'2 and only 175 when this started. I already have absolutely no energy during the day, I suppose as a result of losing 3.5 lbs a week.

 

Can I expect the weight loss to slow down at some point soon? 'm completely wiped out during the day. I barely have the energy to cook for myself. Seeing the scale drop EVERY DAY is scary.

[nvsmom]

I doubt you will continue to lose 3.5 lbs per week for much longer after you go gluten-free (I assume you are still eating it in preparation for the biopsy) but the weight loss may continue for a while after going gluten-free... perhaps a few weeks or even months but it will taper off. It won't stay at 3.5 lbs per week. It will stop, but it may take time, a few weeks or even months.

 

In a couple of years you may find yourself in my boat where I suddenly have to eat less than I ever have in my life or I gain weight.  I assume I am totally healed and this is my (annoying) reward.  

 

In the meantime, snack extra times in a day.  Try energy dense foods like nuts, add protein powders to your smoothies, try coconut cream in your coffee, fry foods in lots of fats... stuff like that.

 

It won't last forever.  Perhaps you'll be one of the lucky ones who starts to regain weight really quickly after going gluten-free.  Good luck.

[cyclinglady]

Hang in there! Luckily, your endoscopy is this week! Eat as much food as you can (even gluten) until all testing is complete. Humm...be sure to follow the prep procedures.

When my gallbladder stopped functioning, you bet I lost weight fast. Why? I was afraid to eat as eating meant horrible pain. I bounced right back and so will you. Someday, you will be back in here complaining about being more than "two bills and some change"!

Remember, celiac disease causes anxiety and you are feeling very sick. Try to baby yourself for a while!

[binkman]

Thanks everyone for sharing your experiences, advice, and wisdom. It has really helped to relieve (a lot of) my anxiety.

 

Living with celiac disease will be a challenge, but as long as it's something that I can manage then so be it. I was (and still am, somewhat) just worried that this sudden weight loss might not be explainable by celiac disease alone, because I couldn't find anyone with a similar experience online.

 

I have been stuffing myself the last few days, on the order of 3000 calories a day, and pounding the Boost High Calorie drinks (which makes me feel like a geriatric) and my weight has stayed stable for the last three days. I was even getting some energy back last night. Hopefully I am turning a corner.

[beth01]

It takes some time for your stomach to heal enough that you actually retain your nutrients.  I have lost an unbelievable amount of weight, over 150 pounds, without diet or exercise changes.  About 45 of that was after going gluten free.  I was never overweight until my mid 20's and then no matter what I couldn't control my weight and then two years ago I started losing weight like crazy.  The last six months, I have been losing and gaining the same 12 pounds, depending on if I'm having good weeks or bad weeks.  It's good that you are on a high cal diet.  I understand that it's scary to watch your scale keep going down, but it will get better and then out of the blue your pants will be tight.  I'm six foot and weigh about 165 and am wearing a size 4 and the only thing keeping me in a size 4 is extra skin.  I understand the scariness but it will get better.

[nvsmom]

Thanks everyone for sharing your experiences, advice, and wisdom. It has really helped to relieve (a lot of) my anxiety.

 

Living with celiac disease will be a challenge, but as long as it's something that I can manage then so be it. I was (and still am, somewhat) just worried that this sudden weight loss might not be explainable by celiac disease alone, because I couldn't find anyone with a similar experience online.

 

I have been stuffing myself the last few days, on the order of 3000 calories a day, and pounding the Boost High Calorie drinks (which makes me feel like a geriatric) and my weight has stayed stable for the last three days. I was even getting some energy back last night. Hopefully I am turning a corner.

Eating safely as a celiac is a lot of work.  Even though you are not gluten-free yet it looks as though you are taking good care of yourself and very conscious of you diet.  I'm sure you'll do well once this biopsy is over and done with!

[binkman]

Thanks again for the encouragement and support everyone. Over the last three days, the weight loss has stalled out, thanks at least to my mom's cooking and all that Boost. I have a feeling (or at least a hope) that I might have had something else going on this month that was just made worse by celiac. I guess its a blessing if it allowed me to catch the fact that I am celiac, though. Hopefully I'm turning a corner in more ways than one this week.

 

My biopsy is tomorrow. I am a little nervous of general anesthesia. I've never been knocked out like this before. I'll be sure to let you know the results. Hopefully there are no surprises in there.

[Gemini]

The only issue that I have is that I am STILL losing the weight! If this takes 2 months to even out, at this rate, I will have lost almost 40 pounds! I was 6'2 and only 175 when this started. I already have absolutely no energy during the day, I suppose as a result of losing 3.5 lbs a week.

 

Can I expect the weight loss to slow down at some point soon? 'm completely wiped out during the day. I barely have the energy to cook for myself. Seeing the scale drop EVERY DAY is scary.

This was my experience also and it sounds like you have what I have.....classic Celiac Disease.  This was how most people presented years ago but that has changed.

 

I am female and am 5' 4" tall.  I went from 105 to 97 pounds in 5 days and after that, it was 1 pound per day until I figured it out and requested the blood panel.  Doctors had failed me repeatedly over many years.  The weight stabilized about 5 days after going gluten free but I had stopped weighing myself by then.  I could have dipped to as low as 90 pounds.  The extreme weight loss usually occurs in those who have no villi left and are not absorbing jack squat.  That was the point I reached.

 

I would suggest eating calorie dense foods and shakes.  Please don't worry....with numbers on your testing like those, you have Celiac and if I can recover, so can you!  I also ate 3 meals per day and snacks in between......it actually was kind of fun to eat all the time and not feel sick.  10 years later, I am 112 pounds and feel pretty good!  All symptoms have resolved, including the horrible, watery diarrhea. 

[binkman]

Okay guys, here are the results from the endoscopy. I really don't know how to interpret them, so if anyone has any insight, it would be great!

 

Upper endoscopy

Quoting findings: "The upper, middle, and distal third of the esophagus were carefully inspected and no abnormalities were noted. The z-line was regular & well seen at the GEJ at 41 cm from the incisors. THe endoscope was inserted into the fundus which was normal including a retroflexed view. The body of the stomach & antrum appeared mildly erythematous. The duodenal bulb was notably edematous with villous blunting. The second part of the duodenum was notable for mild scalloping of the duodenal folds. Retroflexion revealed no abnormalities. Biopsies were obtained from the stomach (2 antrum, 4 body) and duodenum (2 bulb, 4 second portion)."

 

Lower endoscopy

Quoting findings: "A normal appearing ileum, cecum, ileocecal valve, and appendiceal orifice were identified. A 0.6 cm polym was seen in the transverse colon & was removed via pinch biopsies. Four diminutive (<0.5 cm) polyps were seen in the rectum & were removed via pinch biopsies. The ascending, transverse, and descending colon otherwise appeared unremarkable. Mild erythema & loss of vascularity was noted in the rectosigmoid colon. Biopsies were obtained from the terminal ileum (4), ascending colon (4), descending colon (4), and rectosigmoid colon (4). Retroflexion revealed no abnormalities."

 

I asked a lot for SIBO to be tested beforehand, but after the test the GI told me she didn't test for it; I'd have to do a breath test. 

 

So basically I have two questions that I put to you experienced members:

 

1) At 31 I'm a little weirded out that they found any polyps. The scalloping I take as evidence of celiac. Not sure what erythematous stomach might indicate, or the mild erythema and loss of vascularity in the rectosigmoid colon. Any ideas? Or is this not particularly extraordinary?

 

2) I'm sure I'm celiac, and I'm sure I have SIBO. On my clear liquid diet yesterday I was drinking gatorade and it made my lower abdomen swell up like a watermelon. I was Rx an anti-flagellate for blastocystis which I had not been taking before hand, but the GI that did the test encouraged me to take it, especially if I thought I had SIBO. I REALLY DON'T WANT SIBO TO TURN INTO A CHRONIC PROBLEM!   I'm willing to do anything in my power to be as aggressive as possible about that in terms of diet. So what should I be eating? FODMAP? SCD? Both?

 

Just a little worried. 

[binkman]

Also, not sure if it's a side effect of the upper/lower endoscopy, or the first flagyl pill, but I had a bowel movement just 18 hours after my first food following the procedure yesterday...

[cyclinglady]

Also, not sure if it's a side effect of the upper/lower endoscopy, or the first flagyl pill, but I had a bowel movement just 18 hours after my first food following the procedure yesterday...

Transit time can really slow down when you have untreated celiac disease. I had a BM daily, but did not realize that it food was traveling slowly until I prepped for my endo and colonoscopy. No worries there.

[cyclinglady]

I can not comment on the visual results of your Endo/Colonoscopy because I am not a doctor and do not have a clue! . I can comment on the diet. I would try to follow both the gluten-free and SIBO diets for a few months if I were you to eliminate SIBO. I am sure, if positive for SIBO, you will need to follow a strict regime of both drugs and diet.

My diet is both gluten-free and Low Carb High Fat (LCHF) since I have both celiac disease and diabetes. Carbs increase my blood sugar (based on my meter results) and will cause long term complications like neuropathies, eye issues, heart disease. Plus, I aim to keep my feet! I eat lots of veggies grown above ground, fats and a few berries. My diet is not about eating lots of protein which is the big mistake most folks make on a LCHF diet. I am sharing this with you because I have been on this diet for over a year and am doing well not consuming grains, legumes and lots of fruit. I do eat those veggies, even for breakfast (sautéed greens and some soft-boiled eggs with plenty of butter today!) Getting off of sugar is critical and you know, I do not miss it! I can have cheese, butter, yogurt, and cream now, but I did the LCHF/gluten-free diet without dairy, until I healed from celiac disease for about a year. I rarely use artificial sweetner either.

My doctor is happy, I am cranking on my bike, and I think our parent team may just beat the kids in our upcoming water polo match!

[binkman]

Transit time can really slow down when you have untreated celiac disease. I had a BM daily, but did not realize that it food was traveling slowly until I prepped for my endo and colonoscopy. No worries there.

Well, my food is traveling quickly. Only 18 hours and theres lots of undigested bits recently. I think all of my food has been going through me this fast recently.

Could stomach acid production be low? Can that be from celiac?

[binkman]

Transit time can really slow down when you have untreated celiac disease. I had a BM daily, but did not realize that it food was traveling slowly until I prepped for my endo and colonoscopy. No worries there.

Well, my food is traveling quickly. Only 18 hours and theres lots of undigested bits recently. I think all of my food has been going through me this fast recently.

Could stomach acid production be low? Can that be from celiac?

[cyclinglady]

Some folks with celiac disease experience diarrhea, constipation or both! I think your undigested food and fast transit time is due to celiac disease or SIBO. Address those and and do not worry about low stomach acid. Be patient! . It can time a long time to heal!

[Courtnay1]

it sounds like this is GI related

 

Do you notice the symptoms especially after you ingest lactose- milk products

 

or wheat.?

 

 

If these symptoms occur when you eat for example broccoli

 

then it might be related to something else

 

 

There is hyperthyroid conditions too- mabe anemia

[binkman]

Haven't heard from the GI yet, but the results posted online from the biopsy (4 duodenal samples) notes increased epithelial lymphocytes and villous blunting. It doesn't give a lot of details. I suppose blunting means not atrophied, so I guess Marsh 3? If I call, would they give more details or should I wait for the GI to call me? Not that it matters, I guess its pretty clearly consistent with celiac.