In desperate need of help / gluten free SSRI (Cymbalta/Paxil)

[SevereCD02]

So, where to begin... I was officially diagnosed with Celiac Disease about 2.5 years ago and have been trying to fully heal since then. I knew prior that I had celiac disease but didn't know how serious being gluten free needed to be if you have it. My intestines got so damaged that I had no energy (needed about 12 hours of sleep a day when I normally would sleep 8) and could barely function. I ended up having to quit my job because of how much time I had missed (had used all FMLA, vacation, etc) and spent about 5-6 months recovering till I had enough energy to work a 32 hour/week job but even then was calling out because of gluten exposure.

The biggest problem for me has been Rx medication. Food has been hardly an issue at all, at least in comparison. I currently take 2 types of prescriptions and have had problems with both over the past 2.5 years; Hypothyroid medication (T3/T4) & SSRI for depression/energy. I used to go between Paxil and Cymbalta. I would be on one for about 9 months, switch to the other, and repeat (because of the immune system's "short term memory"). I've had a lot of trouble with generic brands and more recently have been using only name brands because they are the only ones now that are listed as Gluten Free on glutenfreedrugs.com, but, now I seem to be having problems with them as well.

My doctor has told me that I'm very sensitive to gluten (I think she said I've ranged from an 8-12?). I'm not sure what scale she was referring to, but I know I'm very sensitive based on how my body's reacted to the smallest amount of gluten. When I ingest gluten, my body seems to react by my gallbladder producing a lot more bile (this is most noticeable about 8 hours after I consume gluten), which causes me to have severe diarrhea for about a week (it's basically all liquid). I take my Rx medications everyday, so it's non-stop diarrhea, which makes it hard to stay hydrated. The more water I drink, the more I just end up ****ing it out. I've been taking Benadryl at night because I heard it can help with upset stomach for people with celiac disease. Before I started taking the Benadryl at night I was waking up after about 6 hours of sleeping with extreme stomach pain (too much bile in my stomach?) and having to rush to the bathroom, and would be in there for about an hour.

I'm very in tune to knowing when I'm getting gluten exposure for 2 reasons: 1) the slightest amount will cause my stool to get softer and I can smell a difference when I go to the bathroom (my guess is it's from the bile, which has a strong odor), and 2) the amount of long acting insulin required for me per day is less depending on how damaged my small intestines are (I have type 1 Diabetes).

I started taking Cymbalta 60 mg about 2 weeks ago and notice severe gluten exposure. I was on it for about 5 days and stopped taking it for a day to see if the symptoms lessened and I couldn't see a difference from only a day. I tried to stop taking it for 2 days but the withdrawl symptoms were too severe (intense sadness/hopelessness, strong suicidal thoughts, etc) and I don't even remember if the gluten exposure symptoms lessened because I could barely function mentally. I'm pretty sure that's where the gluten is coming from because it was the biggest change at the time. I had actually switched from a generic Cymbalta (duloxetine by Mylan) slightly early from my 9 month usual switch because I was having gluten symptoms (at the time, glutenfreedrugs.com listed it on their list but soon changed it to "now questionable").

I'm currently trying Zoloft (been on it for about 3 days now) and the gluten symptoms seem to be slightly less but I won't know for at least another few days. Plus, I don't know if it's actually going to work for me (depression wise). I was going between Paxil & Cymbalta for about 15 years and they were working for me very well (as far as depression) up until recently (because of gluten). I know I've tried Celexa, Lexipro, & Wellbutrin in the past and cannot take them because they either make things worse or the negative side effects outweigh the benefits. I may have tried another type or two of SSRI but it's been so long that I can't remember for sure.

I'm making this post to try and get some advice, or even just words of encouragement, on any generic Rx versions of Cymbalta (and Paxil as well, but I won't be taking it for a while so it's less relevant at this point) that people have recently had success with. I've searched online & this site but haven't been able to find anything recent about these medications (most of the posts I've found are from many years ago). I'm scared. Scared of all the times I want to kill myself in any given day because of not taking an SSRI to try and reduce the gluten exposure. Scared that things will get as bad as they've gotten before and I will have to quit my job again. Scared to cry because I'll become even more dehydrated and may not be able to keep fluid in me because of my body is currently not being able to absorb water the way I need it to. The past 3 years have been really tough and I don't really know where to turn at this point. Sorry if this post isn't the most organised. I'm currently an emotional wreck while typing this and at least trying to get out all the important info.

Here is a list of new things I've been eating in case someone reads this and sees something they've had problems with that might (also?) be causing gluten issues:
Schär Gluten Free Artisan Baker Multigrain Bread (to try and soak up some of the bile, but with constant gluten exposure this doesn't help much)
Ensure Original Nutrition Shake (says Gluten Free on it)
Pedialyte Advanced Care+
Benadryl

[cyclinglady]

21 minutes ago, SevereCD02 said:

So, where to begin... I was officially diagnosed with Celiac Disease about 2.5 years ago and have been trying to fully heal since then. I knew prior that I had celiac disease but didn't know how serious being gluten free needed to be if you have it. My intestines got so damaged that I had no energy (needed about 12 hours of sleep a day when I normally would sleep 8) and could barely function. I ended up having to quit my job because of how much time I had missed (had used all FMLA, vacation, etc) and spent about 5-6 months recovering till I had enough energy to work a 32 hour/week job but even then was calling out because of gluten exposure.

The biggest problem for me has been Rx medication. Food has been hardly an issue at all, at least in comparison. I currently take 2 types of prescriptions and have had problems with both over the past 2.5 years; Hypothyroid medication (T3/T4) & SSRI for depression/energy. I used to go between Paxil and Cymbalta. I would be on one for about 9 months, switch to the other, and repeat (because of the immune system's "short term memory"). I've had a lot of trouble with generic brands and more recently have been using only name brands because they are the only ones now that are listed as Gluten Free on glutenfreedrugs.com, but, now I seem to be having problems with them as well.

My doctor has told me that I'm very sensitive to gluten (I think she said I've ranged from an 8-12?). I'm not sure what scale she was referring to, but I know I'm very sensitive based on how my body's reacted to the smallest amount of gluten. When I ingest gluten, my body seems to react by my gallbladder producing a lot more bile (this is most noticeable about 8 hours after I consume gluten), which causes me to have severe diarrhea for about a week (it's basically all liquid). I take my Rx medications everyday, so it's non-stop diarrhea, which makes it hard to stay hydrated. The more water I drink, the more I just end up ****ing it out. I've been taking Benadryl at night because I heard it can help with upset stomach for people with celiac disease. Before I started taking the Benadryl at night I was waking up after about 6 hours of sleeping with extreme stomach pain (too much bile in my stomach?) and having to rush to the bathroom, and would be in there for about an hour.

I'm very in tune to knowing when I'm getting gluten exposure for 2 reasons: 1) the slightest amount will cause my stool to get softer and I can smell a difference when I go to the bathroom (my guess is it's from the bile, which has a strong odor), and 2) the amount of long acting insulin required for me per day is less depending on how damaged my small intestines are (I have type 1 Diabetes).

I started taking Cymbalta 60 mg about 2 weeks ago and notice severe gluten exposure. I was on it for about 5 days and stopped taking it for a day to see if the symptoms lessened and I couldn't see a difference from only a day. I tried to stop taking it for 2 days but the withdrawl symptoms were too severe (intense sadness/hopelessness, strong suicidal thoughts, etc) and I don't even remember if the gluten exposure symptoms lessened because I could barely function mentally. I'm pretty sure that's where the gluten is coming from because it was the biggest change at the time. I had actually switched from a generic Cymbalta (duloxetine by Mylan) slightly early from my 9 month usual switch because I was having gluten symptoms (at the time, glutenfreedrugs.com listed it on their list but soon changed it to "now questionable").

I'm currently trying Zoloft (been on it for about 3 days now) and the gluten symptoms seem to be slightly less but I won't know for at least another few days. Plus, I don't know if it's actually going to work for me (depression wise). I was going between Paxil & Cymbalta for about 15 years and they were working for me very well (as far as depression) up until recently (because of gluten). I know I've tried Celexa, Lexipro, & Wellbutrin in the past and cannot take them because they either make things worse or the negative side effects outweigh the benefits. I may have tried another type or two of SSRI but it's been so long that I can't remember for sure.

I'm making this post to try and get some advice, or even just words of encouragement, on any generic Rx versions of Cymbalta (and Paxil as well, but I won't be taking it for a while so it's less relevant at this point) that people have recently had success with. I've searched online & this site but haven't been able to find anything recent about these medications (most of the posts I've found are from many years ago). I'm scared. Scared of all the times I want to kill myself in any given day because of not taking an SSRI to try and reduce the gluten exposure. Scared that things will get as bad as they've gotten before and I will have to quit my job again. Scared to cry because I'll become even more dehydrated and may not be able to keep fluid in me because of my body is currently not being able to absorb water the way I need it to. The past 3 years have been really tough and I don't really know where to turn at this point. Sorry if this post isn't the most organised. I'm currently an emotional wreck while typing this and at least trying to get out all the important info.

Here is a list of new things I've been eating in case someone reads this and sees something they've had problems with that might (also?) be causing gluten issues:
Schär Gluten Free Artisan Baker Multigrain Bread (to try and soak up some of the bile, but with constant gluten exposure this doesn't help much)
Ensure Original Nutrition Shake (says Gluten Free on it)
Benadryl

I am so sorry that you are suffering!  

Have you had repeated celiac antibodies testing since your diagnosis?  

http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/

Depression and anxiety can be attributed do to celiac disease if it is active.  It can at least compound  your issues with depression.  What about your thyroid?  Do you have autoimmune thyroiditis (Hashimoto's or Graves)?  Are those antibodies elevated?  

Sometimes the fillers in Prescription drugs can cause symptoms.  It may not be related to gluten but other fillers like corn.   Consider a food/symptom journal to help indentify intolerances.  

Consider the Fasano diet if your find that your antibodies are elevated.  It basically emlimnates all processed foods.  For example, I can not eat Xanthan Gum.  It makes me sick.  So, I can not buy commercial gluten-free breads.  My hubby can eat them, but for some weird reason, I can not despite being gluten-free for for years).  

http://www.thepatientceliac.com/2013/03/04/the-gluten-contamination-elimination-diet/

So glad that you found us!  I am sure others will soon come to your aid!  

 

[SevereCD02]

Thank you for the info cyclinglady! As far as repeated celiac antibodies testing, I think my dr had me tested for that several months ago, and it was improving. I think that's when she had mentioned that "you're an 8 now and you used to be a 12". That was about 3-4 months ago if I recall. As far as my thyroid, I don't ever remember my dr mentioning anything like Hashimoto or Graves, just that my T3 levels were off. When I went to the dr recently (4 days ago), she had mentioned that I HAVE to take a synthetic or natural Rx for it (like Nature Throid) and said I basically can't just stop taking it, and if I stopped taking it that, worst case, I could end up dying. 

[cyclinglady]

I am on Armour Thyroid hormone replacement and it is gluten free (20 years).  I believe Gemini is on Nature thyroid and it is gluten free too.  I have never tried the synthetic drugs as my doctors have always like Armour's results.  Use the search box in the forum to determine which synthetic drugs are gluten free.  

Thyroid replacement, although considered a prescription drug, is just that a replacement.  You need it to survive.  So, do not think of it as taking a drug.  

I would ask for an antibodies test for your thyroid to confirm if it is autoimmune or not.  

Congratulations on your reduced antibodies.  Remember, that they can rise again when exposed to gluten.  I would suggest that you get and keep all copies of your lab tests.  It really helps to have your medical records on hand.  Very handy for second opinions or when changing doctors.  

 

[Megamaniac]

I'm sorry I don't have much advice for you but I can relate in some ways. I've took generic Zoloft for about 10 years. When I was diagnosed celiac I worried about and researched my medications and am confident that they are safe for me. I have spent many years fighting depression and anxiety and have tried different meds but finally accepted I need the Zoloft and Xanax probably for life. I will say that most of our serotonin is in our stomachs and any time I switched meds or had to withdrawal my stomach issues were the worst. So please be careful with switching or stopping ( never cold turkey) any psychiatric medication. Also you could be sensitive to other grains. Gluten free bread does not like me. Also so far I have not found any one in the medical field that takes celiac seriously. I have been laughed at even and most don't have a clue what problems gluten does to us mentally and physically.

[SevereCD02]

@cyclinglady I heard that there were problems with Armour Thyroid when it came to gluten a few years ago. I thought it was no longer safe?

@Megamaniac I had forgot to put that in my original post that I have a lot of issues with anxiety as well. I've never actually been officially diagnosed with a type of depression/anxiety/etc, but I've had problems with that ever since I was pretty young (I think before puberty). I'm sorry to hear about your medical field experience. I've actively sought out doctors (and got lucky having a great primary dr) over the past few years since very few seem to know much about it. The fact that a doctor would laugh at a patient for anything is pretty infuriating. Sorry to hear that. I went to a gastro that barely listened to a word I was saying and only offered a short term "solution" so I never went back to him.

[cyclinglady]

No, Armour has always been gluten free.  The formulation changed a few years back and during the switch, there was a shortage.  That has long since resolved.  Forest Pharmaceuticals (manufacturer of Armour) was bought out by Activas in 2015.  They increased the price!  Now it is comparable to synthetic.  

Imtried to find a good and reputable source about the history of thyroid replacement.  Here is one link -- the story is pretty accurate, but the site is trying to sell you stuff.  

https://thyroidpharmacist.com/articles/the-history-of-natural-desiccated-thyroid-medications/

 

[cyclinglady]

Oh, here is the gluten free drug list.  It is not complete.  It is developed by a pharmacist who advocates for celiacs or NCGIs.    I check this list, talk to my own pharmacist and call the manufacturer.  A hassle, but worth doing.  There might be a few other lists, but hopefully others will chime in.  

http://www.glutenfreedrugs.com/newlist.htm

Pill box box can be helpful.

https://pillbox.nlm.nih.gov/pillimage/search.php

Keep in mind that there are binding ingredients other than gluten that can affect you (e.g. Corn), but that all depends on the individual.  Compounding is another possibility.  

[SevereCD02]

I've been researching Compounding and seems hopeful, but the pharmacies I've called so far (only 2) made it sound like there's nothing for duloxetine (Cymbalta) that's gauranteed gluten free. I figured they would actually take each active ingredient and make the medicine, but the pharmacists I talked to made it sound like all they would be doing is breaking up an already made up duloxetine tablet or capsule... Still have a lot of research to do on it but ty for mentioning it @cyclinglady I had no idea that was even a thing.

[cyclinglady]

This drug used to be on the Glutenfreedrugs.com list.  The previous link I gave you was just a partial from 2017 and the pharmacist is still in the process of updating it.  Here is the old list that could be outdated. Call the manufacturer.  As long as there is no gluten in the ingredients, you should be safe.  Drug companies have strict standards for cross contamination.  They will not guarantee that it is gluten free, but that is what their attorneys want them to say.  

http://www.glutenfreedrugs.com/Glutenlist.htm

or...ask your doctor for another drug to try.  

I do not know you.  I am not a doctor.  Consider the strict Dr. Fasano  gluten-free diet for a few months to see of your depression lifts.  Gluten might be sneaking into your diet.    Depression can be related to celiac disease and can be hard to resolve if gluten is sneaking into your diet.  See if you new thyroid medication helps.

 Talk to your doctor before you go off any medication!!!!

Again, consider the Fasano diet.  It is just fruit, veggies, meats, rice, etc.  nothing processed, even gluten-free processed.   The side effects?  NONE!  

[cyclinglady]

Dear Severe,

I just want to add that depression can require medication. I did not mean to discount your need for it.    It can really help.  I am sad that your doctor is not helping you to insure and reassure you that all your medications are gluten free.  You should not  (no one should) have to do this kind of research when you are feeling sick. 

I have been in your shoes trying to obtain a gluten free antibiotic.  I chose one from the old GFdrugs.com list (my dentist wrote the prescription) and had to go to five pharmacies to find it.  Oh, they could order it, but I needed it that day!  I ended  up calling the manufacturer to be extra safe,    Not easy to do when you are not functioning at 100%.  

I know other members are on anti-depressants.  I hope they can contribute.  In the meantime, I will query the forum.  

 

[knitty kitty]

On 9/24/2017 at 12:30 PM, SevereCD02 said:

So, where to begin... I was officially diagnosed with Celiac Disease about 2.5 years ago and have been trying to fully heal since then. I knew prior that I had celiac disease but didn't know how serious being gluten free needed to be if you have it. My intestines got so damaged that I had no energy (needed about 12 hours of sleep a day when I normally would sleep 8) and could barely function. I ended up having to quit my job because of how much time I had missed (had used all FMLA, vacation, etc) and spent about 5-6 months recovering till I had enough energy to work a 32 hour/week job but even then was calling out because of gluten exposure.

The biggest problem for me has been Rx medication. Food has been hardly an issue at all, at least in comparison. I currently take 2 types of prescriptions and have had problems with both over the past 2.5 years; Hypothyroid medication (T3/T4) & SSRI for depression/energy. I used to go between Paxil and Cymbalta. I would be on one for about 9 months, switch to the other, and repeat (because of the immune system's "short term memory"). I've had a lot of trouble with generic brands and more recently have been using only name brands because they are the only ones now that are listed as Gluten Free on glutenfreedrugs.com, but, now I seem to be having problems with them as well.

My doctor has told me that I'm very sensitive to gluten (I think she said I've ranged from an 8-12?). I'm not sure what scale she was referring to, but I know I'm very sensitive based on how my body's reacted to the smallest amount of gluten. When I ingest gluten, my body seems to react by my gallbladder producing a lot more bile (this is most noticeable about 8 hours after I consume gluten), which causes me to have severe diarrhea for about a week (it's basically all liquid). I take my Rx medications everyday, so it's non-stop diarrhea, which makes it hard to stay hydrated. The more water I drink, the more I just end up ****ing it out. I've been taking Benadryl at night because I heard it can help with upset stomach for people with celiac disease. Before I started taking the Benadryl at night I was waking up after about 6 hours of sleeping with extreme stomach pain (too much bile in my stomach?) and having to rush to the bathroom, and would be in there for about an hour.

I'm very in tune to knowing when I'm getting gluten exposure for 2 reasons: 1) the slightest amount will cause my stool to get softer and I can smell a difference when I go to the bathroom (my guess is it's from the bile, which has a strong odor), and 2) the amount of long acting insulin required for me per day is less depending on how damaged my small intestines are (I have type 1 Diabetes).

I started taking Cymbalta 60 mg about 2 weeks ago and notice severe gluten exposure. I was on it for about 5 days and stopped taking it for a day to see if the symptoms lessened and I couldn't see a difference from only a day. I tried to stop taking it for 2 days but the withdrawl symptoms were too severe (intense sadness/hopelessness, strong suicidal thoughts, etc) and I don't even remember if the gluten exposure symptoms lessened because I could barely function mentally. I'm pretty sure that's where the gluten is coming from because it was the biggest change at the time. I had actually switched from a generic Cymbalta (duloxetine by Mylan) slightly early from my 9 month usual switch because I was having gluten symptoms (at the time, glutenfreedrugs.com listed it on their list but soon changed it to "now questionable").

I'm currently trying Zoloft (been on it for about 3 days now) and the gluten symptoms seem to be slightly less but I won't know for at least another few days. Plus, I don't know if it's actually going to work for me (depression wise). I was going between Paxil & Cymbalta for about 15 years and they were working for me very well (as far as depression) up until recently (because of gluten). I know I've tried Celexa, Lexipro, & Wellbutrin in the past and cannot take them because they either make things worse or the negative side effects outweigh the benefits. I may have tried another type or two of SSRI but it's been so long that I can't remember for sure.

I'm making this post to try and get some advice, or even just words of encouragement, on any generic Rx versions of Cymbalta (and Paxil as well, but I won't be taking it for a while so it's less relevant at this point) that people have recently had success with. I've searched online & this site but haven't been able to find anything recent about these medications (most of the posts I've found are from many years ago). I'm scared. Scared of all the times I want to kill myself in any given day because of not taking an SSRI to try and reduce the gluten exposure. Scared that things will get as bad as they've gotten before and I will have to quit my job again. Scared to cry because I'll become even more dehydrated and may not be able to keep fluid in me because of my body is currently not being able to absorb water the way I need it to. The past 3 years have been really tough and I don't really know where to turn at this point. Sorry if this post isn't the most organised. I'm currently an emotional wreck while typing this and at least trying to get out all the important info.

Here is a list of new things I've been eating in case someone reads this and sees something they've had problems with that might (also?) be causing gluten issues:
Schär Gluten Free Artisan Baker Multigrain Bread (to try and soak up some of the bile, but with constant gluten exposure this doesn't help much)
Ensure Original Nutrition Shake (says Gluten Free on it)
Pedialyte Advanced Care+
Benadryl

Severe,  I'm truly sad to hear of your problems.  I had an awfully horrible really bad time taking antidepressants.  I tried all those you mentioned plus some.  I had the copious watery diarrhea all day and during the night, too.  I lost my job because of my illness.  I couldn't function, couldn't cope, was in a really horrible scary bad place mentally.  So I know how worried you are.  

Some medications are associated with damage to the intestines in Celiacs.  Scientists looked at a group of Celiacs and found those with damage were also the ones taking SSRIs, PPIs, and NSAIDs. More study has to be done, but there is an association. Here's the study.

https://www.ncbi.nlm.nih.gov/pubmed/28220520

 

Cymbalta is a drug that contains sulfur.  Many medications contain sulfur compounds or sulfur-based preservatives.  Some Celiacs develop a Sulfite Hypersensitivity.

http://www.thepatientceliac.com/tag/celiac-disease-and-sulfite-intolerance/

 

At one point, I was taking an SSRI, a PPI, and an NSAID.  The SSRI and the PPI both contained sulfites.  Plus I was on other medications for high blood pressure and type two diabetes, all of which contained Sulfites.  I have this sulfite hypersensitivity.  I got very ill.  So ill, I developed nutritional deficiencies.  I had pellagra.  It was very scary.

Prolonged severe diarrhea like you described, and I had, results in malnutrition because vitamins and minerals are not being absorbed properly and so the body can't work properly.

There are fat soluble vitamins, A, D, E and K.   A low level of vitamin D is linked to depression, hypothyroidism, and a whole list...

https://www.bewell.com/blog/symptoms-diseases-associated-with-vitamin-d-deficiency/

There are water soluble vitamins, the eight B vitamins and vitamin C.  These need to be replenished every day because they can't be stored in the body very long.  Thiamine (B1), Niacin (B3) and Cobalamine (B12) deficiencies all can cause anxiety, depression, and mental changes like dementia.  

https://www.ncbi.nlm.nih.gov/pubmed/19154566

Minerals are important, too.  Low Calcium and low Zinc can also affect brain function, as can low Omega 3's.

Your vitamin and mineral levels should be checked so that any nutritional deficiencies can be corrected.   Many doctors don't recognize deficiency diseases because they've never seen them, and they've been trained to pass out pills.   

Also discuss with your doctor about switching to a MAOI antidepressant.  MAOI antidepressants tend to work better with Celiacs.  

https://www.ncbi.nlm.nih.gov/pubmed/7134841

Try to cut out all processed foods, at least for a while.  And all grains, legumes and nightshades.  And dairy and eggs.  I followed the Autoimmune Paleo diet which helped so much.   Processed foods, gluten free or not, often contains sulfite bleaching agents and microbial additives (like xantham gum) that cause gut permeability.  

I can't emphasize enough how important it is to address nutritional deficiencies.  Celiac Disease causes malabsorption which results in malnutrition.  Until your intestines are healed, supplementation may be necessary.  I went through an awfully horrible terribly bad time when I had pellagra and I don't want anyone else to go through anything similar that could be so easily fixed with vitamins.  Please check your vitamin levels.

Hope this helps.

Kitty

 

 

 

[SevereCD02]

Thank you for the info @knitty kitty. Were the sulfers in the SSRI/PPI/NSAIDs also damaging your small intestines or just causing symptoms?

[Ennis-TX]

There are some natural things to help with stress, I have a corn allergy, and had to drop many of my RX years ago for this reason.

I swear by my supplement regime, and my food regime. I suggest them to anyone as they have pretty much saved, yes I practically worship that bottle of B-vitamins and magnesium and that reassurance and bliss I feel from taking them in combination with my diet. I eat a very high fat diet, and I eat foods that help promote well being and satsifcation by helping the body with saratonin and melatonin. Here is the list

Liquid Health Stress & Energy and Liquid Health  Neurological Support 1 tbsp each 3 times a day

Magnesium wise I would suggest Natural Vitality normally but since you have constant D I would say avoid it as it would irriate your gut too much. Try Doctors Best Magnesium in the powdered form, this way you can measure out your dose for what you need in a drink.

Food wise I swear by cocoa nibs, pumpkin seed protein. I would say hemp but right now there is a huge contamination issue in the industry with it.

As knitty mentioned you might want to cut out some foods many of us have issues with number one offender being dairy. Next avoid any oats period for now. You might drop all grains and nightshades and change to a whole foods only diet. I might suggest baked or boiled sweet potato for your carbs if you eat them, and soft cooked veggies and stews with a bone broth base.

Keep a food diary record everything you eat, and eat a rotating diet removing foods for a couple of days, this includes staples.

One other thought, you might consider you have developed another AI disease or issue. Perhaps a new food intolerance to a staple like corn or a seasoning. I developed Ulcerative Colitis and just got it Dia earlier this year. It is triggered by carbs, and sugars so I had to drop all carbs, sugars etc. and got to a ketogenic diet of nothing but fat and protein. Sounds annoying but I run a bakery and work as a baker so I make my own grain free baked goods, almond butters, etc to eat. For awhile I bought Julian Bakery low carb bread but recently developed my own for my bakery (1g net carbs a slice) Works great and regulated my system, more energy, no sugar issues, and feeling great.

[knitty kitty]

5 hours ago, SevereCD02 said:

Thank you for the info @knitty kitty. Were the sulfers in the SSRI/PPI/NSAIDs also damaging your small intestines or just causing symptoms?

I believe the Sulfites were doing damage.  I've been prescribed drugs containing sulfites since then despite my telling the doctors about the sulfite sensitivity and had all the gastrointestinal symptoms return with a vengeance plus some.  Sulfites cause more than only gastrointestinal problems with me.  My brain doesn't work right, my skin breaks out in boils, my eyes go wonky and I can't focus, my lungs get congested.  It's my whole body reacting.  Takes months to recover.  The more I'm exposed, it seems my reactions are worse.

My heart goes out to you.  I remember what it was like desperately searching for answers when I could barely function.  

Check with your doctor about adding vitamin supplements. Have you been tested for diabetes recently?  Sometimes low blood sugar can cause problems.  Keep a food diary.  Be cautious with processed foods.  Try a ketogenic diet like the AIP, like Ennis suggested.  You have lots of support here on the forum.  Hugs

 

 

 

[ravenwoodglass]

4 hours ago, knitty kitty said:

I believe the Sulfites were doing damage.  I've been prescribed drugs containing sulfites since then despite my telling the doctors about the sulfite sensitivity and had all the gastrointestinal symptoms return with a vengeance plus some.  Sulfites cause more than only gastrointestinal problems with me.  My brain doesn't work right, my skin breaks out in boils, my eyes go wonky and I can't focus, my lungs get congested.  It's my whole body reacting.  Takes months to recover.  The more I'm exposed, it seems my reactions are worse.

 

 

 

Do tell your pharmacist to add that info to your file and remind them when you get scripts filled. Just as doctors won't know for sure if a med is gluten free they won't know about whether they contain sulfites either.  If the med isn't safe for you the pharmacist can call the doctor for an alternative that is safe.

[TexasJen]

15 hours ago, SevereCD02 said:

Thank you for the info @knitty kitty. Were the sulfers in the SSRI/PPI/NSAIDs also damaging your small intestines or just causing symptoms?

Hi Severe-

I have 2 thoughts-

One is that there are other formulations of SSRI/MAOI. Emsam is a MAOI. It is a class of drug that sounds like you haven't tried before. It is administered through a patch on the skin so no gluten exposure at all! I have a friend who tried a variety of SSRIs over her life and finally found a great response in Emsam to her depression.  MAOI are a little tricky because there are some pretty strict dietary restrictions when using them (i.e. no cheese) but if it works, maybe it's worth it. It was for her.

Also, Prozac comes in a liquid form. It says that it is gluten free.  

Finally, 70-80% of our serotonin receptors are found in our GI tract.  A very common side effect of SSRIs is diarrhea, especially when starting and stopping them. Usually there is a 2 week period when starting and stopping where diarrhea is very common and even then some people have it for longer - just taking their regular dose. Your diarrhea could just be a side effect of the medication and not being glutened at all.  As we age, we become more sensitive to the side effects of medications so just because you didn't have diarrhea before doesn't mean the SSRIs are not the cause now.

Good luck!

 

[SevereCD02]

@TexasJen I've been taking Cymbalta/Paxil for many years and never had a problem with diarrhea (until recently because of Celiac's). I know it's not just a side effect from switching because I'm now requiring less insulin, as well as the distinct smell like I had mentioned before. I'm also not getting as much energy as I normally would from the food I would normally eat. I looked up the Emsam but dismissed it because of how expensive it is but I'll ask my Dr about the MAOIs next week. @knitty kitty I've had type 1 diabetes for the past 28 years (since I was 7). Sorry if I'm not responding directly to everyone but know that I'm reading all your responses and taking everything into consideration. I've been doing hours of research every day and I'm exhausted. I slept 10 hours last night. 

[knitty kitty]

Severe,  I guess I should have phrased my question better.  Whenever I had a bad bout of depression or anxiety, I tested my glucose level at that time.  Sometimes it was too high or too low.  Either I didn't have enough glucose in my system so none was available for my brain cells (low blood sugar) or I didn't have enough insulin to get the glucose into the brain cells so the brain cells still didn't have any glucose for fuel (high blood sugar spikes like after a meal or exercise).  Either way, it caused an alteration in brain function.  I was wondering if perhaps something similar was happening with you.  Switching to the ketogenic AIP diet really helped me keep my blood glucose levels regulated. 

I've had my gallbladder removed, so fatty, greasy meals can be a problem (because gallbladders produce bile which aids in fat digestion).  I notice that "distinct smell" if I've had a meal that was too fatty.  Not that I mean to make you worry about something else, but it is something to make note of in your food diary. Perhaps avoiding really greasy foods might help.  (Ha ha, I have input/output columns in my food journal.)  

Do you have a problem with corn?  Some medications use corn starch as a filler.  Corn can trigger a gluten like reaction in some Celiacs (like me).  

I'm hoping you feel better soon.

 

[SevereCD02]

I tend not to eat greasy food and avoid it when my stomach is having issues. I test my blood sugar often and haven't had direct emotional changes from high or low, just physical, ie shaky/weak, lose train of thought (when low) and tired when high. I don't think I have a problem with corn. I've never noticed side effects from eating any type of corn (corn chips, corn on the cob, popcorn, etc).

[Ennis-TX]

8 minutes ago, SevereCD02 said:

I tend not to eat greasy food and avoid it when my stomach is having issues. I test my blood sugar often and haven't had direct emotional changes from high or low, just physical, ie shaky/weak, lose train of thought (when low) and tired when high. I don't think I have a problem with corn. I've never noticed side effects from eating any type of corn (corn chips, corn on the cob, popcorn, etc).

Funny thing about having issues with a food, you do not notice immediate effects if you eat it daily, every other day, in some random form, or if it is a staple. YOU HAVE to 100% remove it from you life for at least 5 days to 2 weeks then try introducing it again. Corn is a complete utter pain to remove in today's society, it is in just about every other medication and in every prepared or processed food. I should know I have a major allergy to it.

[knitty kitty]

 

1 hour ago, SevereCD02 said:

 

Ennis is right about removing suspected problem foods for a time then reintroducing them later and watching for any reactions.  

Severe, I hope this doesn't worry you further.  I've been doing some research and it appears that Cymbalta MAY cause liver damage in SOME people.  It might be worth mentioning to your doctor and getting your liver, gallbladder and pancreas checked.  These studies say it's a rare occurrence, but it does happen.  Better safe than sorry.  I can not remember what antidepressant I was on when I had my gallbladder removed...I wonder....

 

https://www.ncbi.nlm.nih.gov/pubmed/20815829

https://www.ncbi.nlm.nih.gov/pubmed/26467777

[SevereCD02]

I did have my gallbladder checked less than a year ago and it was fine. I removed a lot of corn from my diet a long time ago because I know the body has a hard time really breaking it down. I haven't been strict with it, though, so I'm sure it's still in my system from medicine or other food. My diet has fluctuated a lot in the past few years due to health reasons (celiac, high cholesterol levels). My body also has a hard time processing vasoactive amines, which is in a lot of food. I can eat foods with the naturally occurring chemical in them but I try to avoid it if possible (can cause flem build up, headache, among other things).

Just an FYI, I stopped taking the Zoloft because I was having intense suicidal thoughts. For now, I'm back on Paxil, at least until I can figure out what else I can take. Something in the Cymbalta and Zoloft were causing the same problems for me as far as diarrhea & a lot of bile being produced. Since I went back on the Paxil (it's been 2 days) the diarrhea has calmed down a lot, and, starting today, I'm able to keep down fluids fairly well.

[knitty kitty]

Whew, glad your gallbladder is fine!  And glad you've switched meds and are feeling better.

My low histamine diet seems very similar to your low vasoactive amines diet.  

https://www.mthfrsupport.com.au/dao-deficiency-and-histamine-the-unlikely-connection/

I thought this article about histamine intolerance was very interesting and helpful.  Histamine production is sometimes triggered by certain drugs like Cymbalta and Zoloft.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2248201/#!po=11.3333

And one more about nutrition.

I'm so glad you're feeling better.  

[PammyAnne]

I didn't even get to the end of your post yet because I was struck by your saying you took Benadryl. Benadryl contains gluten! I found out after I had taken some (generic store version) for an allergic reaction to toothpaste. After I got worse, I checked on the store brand and found it contained gluten, so I went to buy some name brand Benadryl and called their customer information number from the store because nothing on the packaging or the ingredient list indicated gluten. But the woman I spoke to said none of the Benadryl products--tablets, capsules, etc.-- were gluten free. I asked her why would a product that people take to lessen an allergic reaction contain a known allergen? She said they do not claim to be for that use.