Adjusting to Life with Celiac and I need Advice

[Danielle1719]

Hi everyone, 

I was recently diagnosed with celiac about 7months ago and it has been a big adjustment, to say the least. After struggling a lot with all the changes I decided to check out this site to hopefully get some advice from individuals who are in the same boat with me.  Prior to my diagnosis, I lost over 40lbs in a very short period of time and if I am being honest it was overwhelming but I was not upset about how my body was "looking" (I say "" because now I know it was not healthy at all). Now though, I have been living gluten-free and it's a completely 180. I started trying to incorporate healthy eating ( watching my macros and trying to incorporate more vegetables and lean meats) and exercise, which has been a new addition as before my diagnosis exercise was something I was terrified of doing because of one too many close calls with the bathroom.  I will say I am definitely guilty of exploring the different gluten-free snacks and sweet alternatives at the grocery store occasionally, but even with all of this I've started gaining weight back (about 10pounds so far) and it seems no matter how much I exercise or try to maintain a balanced diet the weight is just hanging around. And on top of that I feel as though now that I've started eating gluten free my body is still all over the place in terms of digestion. Before obviously as many of you have experienced, had your fair share of diarrhea and bathroom explosions, but yet I was at least going to the bathroom and it was almost consistent, now it's like I feel as though I have to be so careful about the foods I consume because now my body is temperamental about its digestion in an unpredictable way. Which is frustrating in itself because not only do I have to be careful about what I eat but I also have to now be restrictive on the types of gluten-free foods I eat. Yes, my pain and crazy bathroom adventures have gone away, which I am so thankful about, but now it's the opposite and I feel out of tune with my body completely, I never know if I'm going to have a normal digestion day or if I'm going to not go to the bathroom for days. Has anyone else experienced this or am I just a lucky individual who has somehow felt more out of sync with her body since? And if so does anyone have any suggestions on how to handle this. Some days it can be so frustrating because though I feel better in terms of all the symptoms I was having before and my antibody levels have dropped significantly, It is still so defeating to see the scale go up even when I'm trying to restrict myself to a healthy diet and incorporate more exercise.  I know that it is not necessarily a bad thing to be gaining some weight, because of the significant weight loss I experienced and everyone is telling me it's fine  but it has certainly been a big shock to the system seeing my body change so much in such a short period of time and to feel like my body has a mind of its own and is running in circles with no consistency. 

Hopefully, this all made sense. Thanks <3

[Ennis-TX]

Sounds about normal, the worst of it is normally the first 6 months so your about over that. I still 6 years later though get tantrums from my GI tract when I eat something it does not like. 
Do note many of us get new dietary intolerance issues with celiac, and many do not show til after going gluten free. The body was prioritizing the gluten, now the other issues will come out of the wood work. Lactose intolerance is a huge one as the damaged villi do not produce enough enzymes to break it down, you could also get issues with dairy in general. Soy is another big offender, some people have issues with nightshades (peppers, potatoes, etc.), xantham gum is a common offender, and in some cases garlic, onions, corn, legumes (beans, peanuts, lentils) cocoa, coffee, tea, etc. Everyone is different here you will need to keep a food diary and do a elimination diet going down to just simple few foods for a couple of days then trial in one food then take it back out (hokey pokey?) Heck my signature give you a sum of what the disease caused with my complications (I consider mine one of the worst ends)
https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
https://www.wikihow.com/Keep-a-Food-Diary
Oats are another common issue, they are commonly contaminated with gluten grains and some celiacs will respond to oats just like gluten to some degree.
SIBO (Small intestinal Bacteria Overgrowth) is common in celiacs, along with candida, the damaged gut then the rush of processed starchy/carby processed Gluten free foods give them the ideal environment to set in...then comes gas, bloating, and all kinds of other issues. These are addressed with a low carb diet to starve them off, this can also limit bloat as there is less to ferment.

Weight gain, for years your body was starved of certain nutrients even if you ate them you body could not get them with damaged villi, so your body was in horde/fat store mode the initial drop was it finally gave up and started using the stores. NOW your body is getting nutrients it was not getting, you will gain weight initially, do some strength and resistance training couple of sets working up the weight. TELL your body where to put those nutrients and build muscle. Daily cardio, and light weight training will help prevent fat storage (stationary under desk elliptical or bike in front of couch or computer pedal while sitting around working or watching stuff)

SO over all goal, step back off the processed foods, more whole food oriented, and try meal prepping in batches to save time. You might need to adjust your diet now to find what works for you. Took me years but I found my ideal diet set up was a Paleo base, with a keto/atkins macro base.

[GFinDC]

Hi Danielle,

Welcome to the forum!

Some research a few years ago found that it can take up to 18 months on the gluten-free diet to heal celiac damage to the gut.  Not in every case but some.  So it's not surprising that your digestion is not 100% yet and you still have off days.  It sounds like you have a pretty good diet, but there may be a few things that could help.

I don't know if you are consuming milk/dairy products but they often cause problem at first.  So one thing you can try is eliminating all dairy from your diet for a while.

Another thing that may help is eliminating sugar and carby foods like rice or white potatoes etc.  These can cause gut symptoms if your gut flora is not optimal.  They feed bacteria that can cause excessive gas etc.

Another possible help is to eliminate oats.  There are some celiacs who react to oats like they do wheat, rye and barley.

Soy is another possible gotcha in the diet and is also a top 10 allergen.

Spicy foods may cause upset also.

Gaining some weight after going gluten-free is normal as your gut is healing and can begin to absorb nutrients more effectively.  Also some people experience more hunger after going on the gluten-free diet which is normal and should taper off in time.  Your body needs nutrients to heal and create new cells.  So it is better not to do a weight-loss type diet when that healing process is on going IMHO.

I hope you feel better soon.

[cyclinglady]

Hi!

You have been given excellent advice.  I just want to chime in and encourage you to keep moving forward.  It takes time to heal and to identify other food intolerances that may resolve with healing.

Hang in there!  

[healthysquirrel]

Thanks very much for this post. I was diagnosed about 8 months ago and I’ve been dealing with similar issues. I needed to hear that great advice again ? all my best in your healing. 

[AmberJ]

On 2/14/2019 at 10:46 AM, Danielle1719 said:

Hi everyone, 

I was recently diagnosed with celiac about 7months ago and it has been a big adjustment, to say the least. After struggling a lot with all the changes I decided to check out this site to hopefully get some advice from individuals who are in the same boat with me.  Prior to my diagnosis, I lost over 40lbs in a very short period of time and if I am being honest it was overwhelming but I was not upset about how my body was "looking" (I say "" because now I know it was not healthy at all). Now though, I have been living gluten-free and it's a completely 180. I started trying to incorporate healthy eating ( watching my macros and trying to incorporate more vegetables and lean meats) and exercise, which has been a new addition as before my diagnosis exercise was something I was terrified of doing because of one too many close calls with the bathroom.  I will say I am definitely guilty of exploring the different gluten-free snacks and sweet alternatives at the grocery store occasionally, but even with all of this I've started gaining weight back (about 10pounds so far) and it seems no matter how much I exercise or try to maintain a balanced diet the weight is just hanging around. And on top of that I feel as though now that I've started eating gluten free my body is still all over the place in terms of digestion. Before obviously as many of you have experienced, had your fair share of diarrhea and bathroom explosions, but yet I was at least going to the bathroom and it was almost consistent, now it's like I feel as though I have to be so careful about the foods I consume because now my body is temperamental about its digestion in an unpredictable way. Which is frustrating in itself because not only do I have to be careful about what I eat but I also have to now be restrictive on the types of gluten-free foods I eat. Yes, my pain and crazy bathroom adventures have gone away, which I am so thankful about, but now it's the opposite and I feel out of tune with my body completely, I never know if I'm going to have a normal digestion day or if I'm going to not go to the bathroom for days. Has anyone else experienced this or am I just a lucky individual who has somehow felt more out of sync with her body since? And if so does anyone have any suggestions on how to handle this. Some days it can be so frustrating because though I feel better in terms of all the symptoms I was having before and my antibody levels have dropped significantly, It is still so defeating to see the scale go up even when I'm trying to restrict myself to a healthy diet and incorporate more exercise.  I know that it is not necessarily a bad thing to be gaining some weight, because of the significant weight loss I experienced and everyone is telling me it's fine  but it has certainly been a big shock to the system seeing my body change so much in such a short period of time and to feel like my body has a mind of its own and is running in circles with no consistency. 

Hopefully, this all made sense. Thanks ❤️

I had a similar reaction (couldn’t lose weight then lost way too much after diagnosis...then a year later weight ballooned and I couldn’t lose it no matter what) BUT, I have found that my body hates sugar of all kinds. I went on the Whole30 diet at my doctor’s direction (no dairy, no sugar, no rice or other grains), and my bathroom habits straightened up, my energy skyrocketed, and my moods lifted. Took about 6 months on the diet though. I’d say give it time and try cutting something out that you wouldn’t normally think of. Celiac has far-reaching consequences, but even with just eating meat and veggies, I feel so much better that it’s worth it!