I'm A Weird Celiac - Gained Weight?

[pinkscooby6]

I gained about 30 lbs before being diagnosed.

[AliB]

Although I had other vague problems as a child that were undoubtedly due to Celiac, and was a 'dumpy' teenager after puberty, I really started to gain weight when I was around 20 and particularly when I was pregnant with my first baby nearly 30 years ago. Up to recently, for the last 20 years I have been lugging around the best part of 100lbs and still need to lose another 60lbs.

The only 2 times in my life I ever felt well and lost any substantial weight was when I went low-carb. Of course, in dropping most carbs I also dropped most gluten, too so it's not surprising. Unfortunately, as is the way of these things, eventually gluten would get the better of me and I would go back to the old habits and end up gaining it all, as you do.......

Funny thing is, despite the 'experts' and most other people's (who don't have a weight problem) opinion that it is due to gluttony, I never felt that I was eating any more food than anyone else. I would eat about the same as my husband (or even less) but he didn't have a weight problem, so I knew it was down to an organic problem somewhere.

I never craved pastry or bread, or cake or sweet things - I always said that I would rather have a ham sandwich than a jam sandwich - but I did and still do crave chocolate and fats, like butter and cream (can't have them now as I'm off dairy as well as gluten). Ron Hoggan was saying that the reason (and I had concluded this recently before ever reading his article) that obese people can't stop eating is often because their bodies can't get not only enough nutrients but not enough essential fats either. The gluten damage stops them being absorbed. The calories still pile the weight on, but we are lacking vital cell-building ingredients.

With the weight, and what I now know to be malabsorption due to Celiac/GI, I eventually ended up with insulin-dependent diabetes - also another Celiac symptom, along with the weight gain.

I have a theory that the weight gain, and likely the diabetes too, may well be due to too much sugar entering the bloodstream via the Leaky Gut instead of via the liver as it should, triggering the Pancreas to shove out a heap of insulin to counteract it. Too much insulin will not only lower the blood sugar too fast and too low, then triggering hypoglycemia (which I had a lot before the diabetes). The hypos would make me want to eat and the cycle would start all over again.

Unfortunately too much insulin encourages weight gain, so the cycle is self perpetuating.

When I was low-carbing, the low gluten consumption was probably giving my gut a chance to heal which helped the weight loss and gave me more energy, and I am so kicking myself for not realising why and keeping it going back then!.

Now the damage has reached a point where it will take some considerable time for it to heal. Even though I am not only avoiding gluten and dairy and have radically cut the carbs and sugar I am still struggling to keep the weight down and only have to look at carbs to see it rise. I have been DF and gluten-free for around 3 months although I only realised the other day when I finally started to get 'proper' gluten reactions as my immune system has started to kick back in, that I have been getting low-level gluten all along. Reactions I thought were intolerances to other foods, was to gluten from sources I thought were safe, so I have not been getting the full benefit of the gluten-free diet.

Hopefully now I can nail it down and do it properly and should start to see a better result. I am confident the weight-loss will happen, especially as I am low-carbing, following the Specific Carbohydrate Diet and am eating more protein and fats according to my Metabolic type (I am an extreme 'Protein' type, as the Leaky Gut starts to heal and my body finally gets the chance to work properly for the first time in many years.

[jparsick84]

Does anyone here still crave certain foods like: sweets, peanut butter, almonds after you went on a gluten-free diet? Before I was diagnosed with Celiac I dropped 15 lbs and now that I am absorbing again I have put the weight back on plus more. Some of these posts are a bit confusing, not sure if some of you had weight gain before being diagnosed or after?

And does anyone have a problem chewing gum? Cause I have the belly thing going on too and not sure what to do about it.

Yes! Since going gluten-free, I've discovered I can't tolerate artificial sweeteners - which includes sugar-free gum, diet soda, and Splenda. I'm sort of hoping that once my gut heals I might be able to tolerate them again later, but I'm not holding my breath. Have you noticed the reaction with other artificially sweetened things?

[susieg-1]

It's so nice not to be the only one. My celiac belly (or just my fat) makes me feel so embarrassed. I am working on not feeling bad because I'm overweight. Walking or riding my bike daily helps me feel energetic. I've started the grain-free diet and I feel more in control, although I'm still hungry all the time. I'm filling up on leafy greens, and using spaghetti squash to replace the rice and noodles.

Susieg, did your joint pain get any better gluten-free? Have you tried nightshade free?

~Laura

at first joint pain improved then got worse again, I am now completely sugar free and not just high fructose corn syrup free!!! I am trying to lose weight by giving up all carbs for awhile, no gluten-free breads, pasta, etc... for now. I gained 20-30 lbs just prior to going on gluten-free diet and have not gained since but have not lost it either. I tried eliminating nightshades for a week and it did not seem to help like sugar free has. Maybe I did not do it right!! tomatoes, potatoes, mushrooms, any other nightshades??? Am currently working towards Lyme Dx and treatment that I hope makes all the difference!!!

[little d]

I could not ever figure out why I was always so hungry too. My husband always likes to go out to eat on the weekends we would eat a very heavy meal and I would always complain about being hungry an hour later, that is also when I was wondering why I was gaining weight as well and why I hurt in all the wrong places in the inoportune times. I had always thought that if I cut back on what I ate I would lose some weight, cut out lunch and only eat a small breakfast and not eat dinner after 6pm. That worked a little because my lunch was always a sandwhich of some kind. Then I thought my weight was because I worked nights and my body changes from sleeping days and not nights, this is were I became more aware of my bathroom issues and how I felt. I have always had issues since I was a little kid but never made any connection to anything. Until my sister who was researching the internet on her issues very simular to mine, but more with nightshades and other stuff. The more that I found on the internet the more it made sense, but unfortunately for me all the testing that I have put myself through has all came back negative except the Enterolab my numbers were a elevated some, but I know that I can't take that as an official diagnoses, so I am just tregging along trying to eat gluten free as much as possible, knowing my limits on foods and I finally losing weight that I packed on after my daughter 8 years ago. I was 126 lbs before my daughter and I bollooned up to 160lbs and now I am holding at 147-151lbs. And I am not as hungry between meals, I can go longer.

donna

[msmini14]

I stopped eating carbs and limited the amount of sugar I consume. I have noticed since I knocked out carbs I am not hungry ALL day long. So instead of eating grits for breakfast I eat a hard boiled egg and it holds me over until lunch. When I ate grits, I would get hungry around 10 Am, eat a bananna and still be hungry. I have expermented with this and if you cut carbs and sugar it will curb your appetite. I have put on 15lbs since going gluten free and lots 15lbs before I was diagnosed with Celiac. At least I came out even for the most part lol, kind of.

[KathrynW]

I'm new to this forum but have enjoyed reading through many of the posts.

I came looking for a post like this because I was curious how many other people with gluten issues are obese prior to diagnosis instead of overly thin. I recently typed up my story regarding this on my blog which you can find by checking the 'interests' part of my profile. But the basics are:

Gluten kept my appetite roaring for 39 years and it took having it out of my diet for 6 months before I knew what it was to eat and feel satisfied. My weight is also starting to drop now. It didn't matter how much I ate or even if my stomach was so full that it was painful, I was always hungry and have been for as long as I can remember. Removing gluten is slowly but steadily changing that. The smallest amount accidentally consumed in a spice on a burger while with family at the lake brought it back for over a week.

As a kid I was diagnosed with juvenile arthritis, frequent colds/flu/etc., and as a young adult with hypothyroidism. I herniated a disc at 19 and dealt with chronic pain for years afterward. After removing eggs from my diet, the thyroid returned to normal in 9 months and I've not had a single cold since then. Now that gluten is gone, so is the 'eczema' and constant hunger. I found something called IntuFlow that helped my joints to regain some health and feel better by getting the nutrition I was able to get to them, but I'm sure that they were being affected by the allergy and intolerance...they wouldn't have reached the state they were in if I had been able to absorb nutrients properly and if my body hadn't always been so inflamed.

Life without gluten is better. As I'm sure you all know, it isn't always easy to avoid it, but it certainly is worth it. Three cheers for the freedom that comes with knowing the cause and being able to do something about it!!

Take care,

Kathryn

[angieInCA]

I'm a gainer too!

Over the past 8 years I have gained 50 lbs. I am not an over eater and I exercise. I kept asking my Dr. what was happening and he just kept saying well when you get older you tend to gain weight. OK, I can accept that if it was 5 or 10 lbs but not 50! I have never had cravings except when pregnant and I really have a hard time consuming more than 1200 calories a day but the weight just kept creeping up and I couldn't lose an ounce.

Three weeks gluten free and I have lost 10 lbs. I still eat carbs, actually probably more now because I have increased my fresh fruit intake. I have had to cut out all lactose so my dairy intake is limited . I've actually thought about cutting out almost all grains till my gut heals and then reintroducing them one at a time.

[mymagicalchild]

Boy, do I connect with this topic. I was so skinny all my life! Now my husband smilingly calls me his baby whale. (Maybe that's a grimace, not a smile.)

I know two things will tell me I am cured: I will have my thin, healthy body back and the arthritic inflammation in my fingers will be gone.

One Can Dream!

[purple]

Boy, do I connect with this topic. I was so skinny all my life! Now my husband smilingly calls me his baby whale. (Maybe that's a grimace, not a smile.)

I know two things will tell me I am cured: I will have my thin, healthy body back and the arthritic inflammation in my fingers will be gone.

One Can Dream!

I just read something about arthritis and nightshades last night...maybe someone else knows more.

Here it is: Open Original Shared Link

[mftnchn]

I posted earlier and want to add an update that I have lost quite a bit of weight since starting the SCD in mid July. What amazes me is that I can eat honey and fruit and still lose.

I agree with an earlier poster that I gained weight prior to diagnosis because my body was in starvation mode--it just what makes sense with what I have seen.

Apparently, the celiac damage has not recovered with gluten-free--it wasn't enough. I am still not making the carb digestive enzymes (not just lactase but other ones needed as well) which are made in the villi. I am responding very well to the SCD diet symptom wise as well as weight wise.

So many of you have mentioned carbs as an issue, I wonder if you are in the same boat as I am. I am so excited to be back within 15-20 pounds of my ideal weight!!!! I've lost 50 or so since going gluten-free.

Lab tests can be done to check for sugar excretion in the stool.

[Amber M]

I'm already a bit of an abnormality, as my Celiac symptoms were always strictly skin-related (DH like you wouldn't believe!). I was VERY lucky to not have the gastro symptoms so common with most Celiacs.

In relation to this, I actually GAINED 50 pounds before they diagnosed me. (We realized there was a problem when I was exercising 6 hours a week and still gaining weight). I think it's because I was always hungry, so I just kept eating, and I must have been getting enough of the good stuff that I was absorbing at least some of the food I was eating. Also, my symptoms were present for only about a year before diagnosis so I don't think my intestines were too badly damaged.

So my question is, is there anyone else out there who actually gained weight? My doctor was really confused by the weight gain being related to Celiac, but since going gluten-free, I haven't gained any more weight. Just knowing there are other "Celiac Weirdos" out there would be really great as I start to try to lose this weight...Thanks.

I thought I was the only over weight person with gluten int. Some times people and Doctors look at me like I'm crazy because your suppose to be under weight ! So glad to hear all this. I have gained one pound since gluten free over a month ago. I think that I was feeling sorry for myself because I couldn't have gluten, so I was making up for it in the other things I could eat. I had suddenly gained over 50 pounds in my thirties, now 51 and have struggled all this time. I was thin as a rail for all the years prior to that. This helps to hear others have the same problem.

[mftnchn]

Amber I was also thin until into my thirties and suddenly started having a lot of problems; now I am pretty sure it was the damage to the intestine, lack of digestive enzymes (undigested food causing havoc) and going into starvation mode due to severe malabsorption.

[RissaRoo]

Sadly, count me in! I was always on the thin side until I had my 3ed baby. I had surgery right after her birth, and my health just went downhill! I think I may have had celiac's or at least some nasty food intolerances before that, but they got 100x worse after. I gained quite a bit of weight...I don't know how much but I bet at least 20 lbs. I craved bread, wheat, noodles....ANYTHING gluten. If I went on a diet, it didn't matter...I was still gaining! When I went gluten-free (despite my dr at the time's telling me firmly that I couldn't have celiac disease unless I'd lost 15 pounds in the last 2 months w/out trying! Duh!) I lost 5 pounds the first week! I think it was all water weight, but the rest of the weight came off fairly fast after that. Now I know that if I get glutened, one of the first symptoms is that I balloon out with water retention...think PMS at it's worst sort of puffy all over. Sigh. I did notice, though, that the last big gluten episode I had I ended up *losing* weight...once the water retention went away I had lost several pounds. Tempting....lol

[munkee41182]

I'm a gainer! Weight Watchers for 4 years and gained 10lbs - and I was very regimented on WW. I went gluten-free, about a month later I lost 5 lbs and it's been trickling off ever since. I'm down about 15lbs since going gluten-free 4 months ago. I was also my heaviest when I was diagnosed too.

[sillyken]

I've been reading all your posts today and I feel your frustration. I was diagnosed in 2004 with Celiac and Dermititus Herpetiformis. I've been good with the Gluten Free diet and can tell when there has been cross contamination issues. When I started the diet I was just the weight for my hight 175 pds to my 5'11 body 36 inch waist. After I found the foods that I hungered for, comfort foods like banana bread. I'm telling you, I have a banana bread recipe to die for. But I am now 220, my pants are tight at 40, and I definitely have this celiac belly. Even though I've tried balancing things out with salads, drinking more fluids and eating more fruit. Now that we've talked about the problem what is the solution? I'm dieing to know.

Ken

[mftnchn]

Ken, gluten-free foods tend to be higher in glycemic index. Maybe a dietician could help? I wouldn't think you are dealing with gluten inflammation since you were at a good weight when you went gluten-free. Just a thought, not sure.

[Veronica2]

Hi,

I am new to this forum- just registered today in fact!

I wanted to post here because I also had unexplained weight gain along with many other symptoms before being diagnosed gluten-sensitive (via EnteroLab) in the beginning of July. It was so frustrating and puzzling to be eating so carefully (way before I was diagnosed) and exercising faithfully (although fatigued) and not seeing any results and actually gaining weight!

Anyway I think my weight gain (15 lbs. on a small frame) was due to high cortisol levels and adrenal problems caused by gluten sensitivity. Evidently celiac can cause thyroid problems too. I'm currently on 1 grain of Armour and 5 mcgms. Cytomel and have lost 5 lbs in the past few weeks. I'm really hoping as I heal that I'll continue to have more energy and lose more weight.

So glad to have found this thread!!

[Hummingbird4]

Hi Veronica, welcome! I am also hypothyroid (for 11 years now), and am currently taking 100 mcg of Synthroid a day. But my doctor keeps refilling my Rx without testing me, so I haven't had any tests run in the past couple of years! I'm going to call today and see if I can get in this week for some updated lab-work.

So, I've been pretty good this week but not great. I lost a pound - better than nothing! I have not had any candy of any kind all week, which is a miracle for me. I had regular sugared yogurt twice, but at least it had real sugar in it and not high-fructose corn syrup. I also had a few potato chips yesterday. Otherwise, it's been healthy fresh foods for me all week long. I was hoping to be rewarded with a nice loss, maybe next week.

I'll be exercising quite a bit this week. I am playing tennis two times today, walking hills tomorrow plus more tennis tomorrow, tennis Wednesday, and practice with the ball machine Thursday.

[Greg-nj]

I must say all these posts have made me feel somewhat better. I thought I was the only weird one. I've been gluten-free free for over 2 years now and have gained about 15 pounds and have "The Gut". I do a lot of walking in my job along with lots of lifting and I still can't lose any weight, or lessen "The Gut".

I had DH in my late teen years and was on Dapsone for over 15 years. In my late 30's, the DH just went away (so I thought!). I'm 6'2" and my weight stabilized at around 180, slim & trim, I could eat anything! Then 2 years ago at age 55I started getting sick. I lost 55 pounds in 3 months along with the enamel on my teeth, my fingernails turning to paper and my hair falling out. With the help of this site and others, I realized that my DH had come back in another form. Within 1 week of going gluten-free, I started to get better and gain the weight back. Now, I can't get it off!

I do all my own cooking, no junk foods at all (except some ice cream on occasion). We are vegetarians (ovo & lacto) and eat a lot of Mexican style foods, beans, rice & salsa. Also some soy foods. I suspect there could be too much cheese or even beans in my diet, but it is rather hard to give up even more foods.

In any case, just wanted to add my experiances and hope some others may find it comforting.

[Pain in Amanda]

Another "weird" one here. Celiac fighting weight gain. The article suggsted below was VERY HELPFUL. Thank you.

[Pain in Amanda]

What is the SCD diet?

[julirama723]

Gluten made me gain, too!

I am new to this board, but not new to low-carbing. (I'm very active on a low carb BB.)

About 2 years ago, I was pushing 300 pounds, and I started Atkins, which focuses on healthy fats, adequate protein, and healthy carbs. I lost about 100 pounds in a year, adhering to the plan, working my way up the "rungs" and adding more healthy carbs each month or week, until I made it up to the final rung, whole grains. It was then that I began having problems losing weight, or shall I say, my weight loss stopped. I was exercising 6x/week, doing a mix of running, yoga, strength training, kickboxing, etc. I thought perhaps it was because I was so close to my goal weight (10-15 pounds away.)

I've been following Atkins this whole time, and after the holidays last year, I cut grains out again because I felt so out of control with them and bloated. Since February, I've gained 20 pounds back. This coincides with the start of my marathon training (I ran a marathon in July) which is also when I started eating things like CLIF bars, whole grain bread, whole wheat tortillas, etc. to fuel my training runs. I figured that when I'm running 15 miles at a time, this will help my body. (I'd already been eating fruits and higher GI foods, too.) I was trying to give myself the most nutrients I could--protein, fats, fiber, good carbs.

The majority of the 20 pounds I've gained is in my belly/midsection. NOT muscle. After the marathon, I cut back on foods (I actually went back to induction, first time in 2 years) and lost about 5 pounds immediately. Then I went on vacation, ate my old LC favorites (like whole grains) and my weight came back. I thought it was just me being a pig, when I wasn't even over-eating! And I exercise like crazy!

It wasn't until my mom was diagnosed as being celiac last week that I put 2 and 2 together. I never seriously considered celiac/gluten-intolerance as a possibilty because never in my life have I been underweight. I decided to go gluten-free and in the past week I've already lost about 5 pounds, and I'm still eating fruits, beans, honey, fats, proteins, even had a couple of glasses of wine this weekend.

Low-carb is definitely the way to go for a lot of people, myself included. Remember, anything that is plant-based is a CARB. Stick with salad veggies, other veggies, berries, protein, healthy fats (avocado, nut butters, olive oil, flax) as the basis of your diet. Include higher GI fruits, legumes, and starchy veggies occasionally.

I always advise people to AVOID anything that says "low fat" or "light." These products have added starches and fillers and carbs. The whole-fat products are pure and unadulterated, and while they may contain more calories, fat gives you a feeling of satiety that carbs cannot, so you'll probably end up eating less. Remember, eat foods in a natural, unprocessed state. Even gluten-free (or low-carb) junk food is STILL JUNK FOOD! )

[LadyWicklow]

Count me in too.

I always had a huge appetite, but my weight stayed under control.

I gained 45lbs, for certain, between 1998 and 2003 (and I wasn't skinny in '98).

I couldn't lose weight whatever. I gained constantly with weightwatchers.

I did the Atkins diet in 2003, lost 17lbs in the first 3 weeks, stuck to it rigidly for 18 months, and didn't lose, or gain an ounce. "Ate healthy" until early 2006 and gained back 30lbs.

The only way I could lose weight at all was on a very low calorie, low carb, total food replacement diet that I won't name because they slipped over into unethical advertising at this stage. I lost 60lbs and got my weight back into the "sane range". Over 7 months on the same diet, with a few bouts of eating mostly protein, I was "accidentally gluten free" ate a sandwich at a tea party, gained 9lbs water weight overnight and wound up diagnosed at last...and finally free from a mile long list of "metabolic and other problems" I had been trying to learn to live with for decades.

I gained about 18lbs since I started actually eating "gluten free" (instead of total food replacement) so I am now somewhat overweight again, but I am fighting to stabilise my weight and start losing again while actually eating at all.

I have discovered I am sensitive to:

• Dairy
  
• Eggs
  
• Tannins
  
• Peanuts
  
• Red/oily fish
  

I also find that certain carbs seriously upset me and the SCD may work very well for me.

I certainly hope so...

I just want to lose about 20lbs so I can be at an "ideal weight" for the first time in decades...particularly as I am menopausal and fighting back.

LadyW

[Yenni]

I gained when I was sick eating gluten and lost when I stopped and got better.