Confused, scared and in need of some help

[KathrynN1995]

Hello everyone, 

i will try my best to keep this short but it may not work that way as it’s a long ish story. For about a year I’ve been having some awful stomach issues, diarrhea mostly and weight loss. I had an elevated calprotectin but blood work was normal. I had a colonoscopy, they found some inflammation near the rectum but they gave me a follow up for months later and no one seemed all that concerned, I was told it went well and that I was fine. Finally I was sent for blood work to determine if I have a gluten allergy. I got a call and was told that based on my blood work they want to do an endoscopy to confirm a Celiac diagnosis. I’m an emetphobe (I have an extreme phobia of vomiting which I’ve been in therapy for my whole life) so naturally I decided to forego the endoscopy and just go gluten free. I also had read that the blood work tends to be fairly indicative of a gluten allergy and that endoscopies can produce false negatives. Either way 2 months later here I am, totally gluten free but unsure if I’m improving. I have good days and I have bad days and because I started taking Imodium every day and haven’t been able to stop without experiencing withdrawal (which apparently happens since it’s an opiate...I was clueless to this) I literally don’t know how I’m doing, I ont have diarrhea anymore but I’m taking an anti diarrheal so who knows.  The people around me are telling me I seem better (more energized, sick less often, generally happier). As someone who struggles with a lot of mental health issues (depression, health phobias, anxiety) I honestly can’t tell. I’m still experiencing issues with going to the bathroom. Sometimes my stool is mucousy or seems to be full of undigested food. I’m not gaining weight or losing it (at least). On the other hand I I have days where I feel very well. I’ve continued to consume dairy, soy and really everything else. I guess I’m just looking for some advice, I’m so tired of feeling sick, I don’t feel like the person I used to be and I don’t feel like I have the support of my doctors or really any resources for this. I’m happy to never consume gluten again if it means I’ll feel generally well. Also, how long should it normally take for me to feel well again on the gluten free diet? If anyone has any tips, personal stories of success or really any insight for me that would be immensely helpful. 

Id also like to mention so you guys have all the info that some of my initial symptoms included headaches (often), mouth sores (canker sores), more hair coming out in the shower (I thought I was crazy but seriously I was losing hair), skin issues, and just a general malaise as well as bloating, gas and nausea. 

Thank you you so much in advance and sorry for the kinda gross information I shared.

 

Regards, Kathryn. 

[Ennis-TX]

Might be good to read the newbie 101 section to be sure your really gluten free,https://www.celiac.com/forums/topic/91878-newbie-info-101/ also if you post your blood results I am sure someone here will help you decipher them. A few months in is not far into the diet, if you have celiac you took years to rack up damage. I read a paper last week talking about it taking up to 24 months to completely heal the intestines, but most here see slow improvements after 4-6months and more dramatic after a year.

Few thoughts drop dairy...stuff is useless if your seeing undigested foods. The villi in your intestines produce the enzymes to break it down....they are destroyed by this disease so you get lactose intolerance and all the stuff that goes with it.
Soy can cause bloat and is often a intolerance try removing it to. You can try them again in a few months and see how you feel.

With D I found a high potassium diet and eating stuff that give s my stool bulk and dry it out like coconut flour baked goods, to help and eating tons of seed meals, nut butters, avocados etc....I live on fat and protein to reduce gas/bloat and deal with other AI disease.

 

[tessa25]

I would recommend that you get copies of your blood tests  so you know what your celiac levels were at diagnosis. After 3 - 6 months you can retest the celiac blood tests at the same lab and see if your numbers have started going down. If they go down then you know your doing pretty well with the diet.

With the undigested foods you can try eating more smaller meals. So if you currently eat 1 cup of food 3 times per day you can try eating 1/2 cup of food 6 times per day. Spaced at least 2 hours apart so your insides can keep up.

For reference the full celiac panel includes:

TTG IGA
TTG IGG
DGP IGA
DGP IGG
EMA
IGA

[PK-432]

The withdrawal usually takes 1 month at least as it happened to me and to feel well depends on the damage of intestines.  Keep yourself on gluten free diet and stop taking immodium if you want to see the difference.  My prayers and good wishes are with you for recovery.  Best of luck. 

[KathrynN1995]

Thank you guys so so much for the quick replies. I never thought to redo the blood work to see if there’s been a change. I honestly don’t even know how to get my blood work. I’m in Canada and the phone call regarding my blood work came from an unknown number aka a hospital but my gastroenterologist is at a clinic and basically impossible to get ahold of so I just haven’t been sure who to call. Not to mention the doctor literally acted mad at me for not wanting to do the endo. It’s not normally this bad here but I think I just got unlucky with my gastro. I will do my best to track the info down and get it on here. As for my diet, I’m sure I’ve messed up more than once or twice but now the house is totally gluten free (I basically spent an arm and a leg at a health food store on stuff that explicitly says certified gluten free on the front of it just to be sure) so when I’m cooking for myself I know I’m eating gluten free. I’m not used to having to watch what I eat/how often etc. but I’m going to take all of your advice. I’ll be back with the blood work results and hopefully someone will be able to decipher them for me. Thank you! 

 

Ps. I would love to stop the Imodium but my body goes into withdrawal, last time i tried I ended up in the ER because I just thought I was dying. My pharmacist can’t believe it’s giving me the kind of withdrawal that it is given that I only take one a day at 2mg but I get the shakes, nausea, restless leg, pain all over and I just can’t afford to miss work because of it. If anyone has any advice on that also please feel free because I’m not getting much support from medical professionals and it’s really a shitty situation (pun intended)

 

thanks! 

Kathryn. 

[Ennis-TX]

8 minutes ago, KathrynN1995 said:

Thank you guys so so much for the quick replies. I never thought to redo the blood work to see if there’s been a change. I honestly don’t even know how to get my blood work. I’m in Canada and the phone call regarding my blood work came from an unknown number aka a hospital but my gastroenterologist is at a clinic and basically impossible to get ahold of so I just haven’t been sure who to call. Not to mention the doctor literally acted mad at me for not wanting to do the endo. It’s not normally this bad here but I think I just got unlucky with my gastro. I will do my best to track the info down and get it on here. As for my diet, I’m sure I’ve messed up more than once or twice but now the house is totally gluten free (I basically spent an arm and a leg at a health food store on stuff that explicitly says certified gluten free on the front of it just to be sure) so when I’m cooking for myself I know I’m eating gluten free. I’m not used to having to watch what I eat/how often etc. but I’m going to take all of your advice. I’ll be back with the blood work results and hopefully someone will be able to decipher them for me. Thank you! 

 

Ps. I would love to stop the Imodium but my body goes into withdrawal, last time i tried I ended up in the ER because I just thought I was dying. My pharmacist can’t believe it’s giving me the kind of withdrawal that it is given that I only take one a day at 2mg but I get the shakes, nausea, restless leg, pain all over and I just can’t afford to miss work because of it. If anyone has any advice on that also please feel free because I’m not getting much support from medical professionals and it’s really a shitty situation (pun intended)

 

thanks! 

Kathryn. 

I had to wean off adderal and zoloft years ago, I started halving the doses, then quarter, then a quarter of a pill every other day then just a few times a week then quit. The zoloft I replaced with B-vitamins, cbd, cocoa nibs....to try to naturally help with depression (hind sight with recent life and suicidal thoughts maybe I should try a quarter pill again) Anyway the adderall was a hard one to drop and I kept on taking a 1/4 pill every now and then for a month or so....I pretty much took my whole supply and cut it up and portioned into many bottles to make it more troublesome.

Perhaps do this with immodium? Cut your pills into 1/4 peices and place in dosing pill carriers and slowly taper off.

 

[tessa25]

You can buy a pill cutter at the drugstore and do what ennis says.

[frieze]

Immodium comes n liquid form...  I can not imagine what is causing the withdrawal problem...but what is, is.

[Kathryn1995]

I’ve tried getting off them that way and I don’t get the restless leg or the pain all over but I get extremely nauseous and as someone who’s deathly afraid of throwing up (I’ve been in therapy since I was 14- now 23 for this phobia) I immediately run to take another pill when this happens. My mental illness is definitely hindering any progress I could be making here sadly :(. I called my dr, they told me they can’t give me my results? They said I have to show up in person but that even then it can’t be now? I have to wait till later in the month. I’ve never heard this before but I guess this new gastro doctor Is just an ass%$@#. I even asked they send the Info to my referring GP and they said no. I got the call telling me the results were positive 2 months ago, why should I have to wait till September ?

You guys have been amazing answering to my questions and I have one more. WHen you guys eat gluten accidentally do  any of you get loose stool/D that feels like it can’t come out all at once. Only way I could describe it is “constipated diarrhea”. I think I may have consumed gluten accidentally and this is my main symptom along with shakiness and nausea. Also, is there anything I could eat/drink to make this awful feeling pass faster? I think I need to start eating only the things I’ve made personally because any time I eat out I get sick, even when I’m being extremely careful and checking with the wait staff over and over again. 

Sidenote: I’m very grateful for this website and these forums, if anyone here ever needs support or just someone to talk to I’m here anytime!