About to get a blood test, scared and sick.

[confusedandsick]

I’m sorry that this will be vent-ish, I just want to know if anyone has similar experience. 
Hi, I’m female and 18 years old. For the past few years, I’ve been suffering extreme bowel issues. Constant gas, nausea, bloating, chronic diarrhea. Around a year and a half ago, I noticed something off with my stool. It had become yellow with a “greasy” “mucus-y” texture (sorry I know that’s tmi, but I’m sure you guys get it.) I had constant lower/middle abdomen pain. It was so bad that I would often be hugging my stomach tight, I was in so much pain I just wanted to sob. I spend almost every day in constant pain and nausea. I feel lightheaded, dizzy, and experience a lot of heartburn and indigestion. I vomit all of my food back up in my mouth. Recently, I was in the car with a friend and had to open the car door just to throw up all over the ground. Also, whenever I eat gluten I get these crazy canker sores inside of my mouth. They don’t seem to be triggered by anything other than that. I also experience a lot of dermatitis and rashes after I consume gluten. These symptoms are so debilitating, the pain is unbearable. I just want to sleep forever sometimes so I don’t have to bare it. 
I’m done with these symptoms. I haven’t been able to avoid some contamination and accidental digestion of gluten products, but I’ve tried to get rid of them as much as possible. Living on a gluten-free diet is so expensive. But ever since I started getting rid of the gluten in my diet, I feel like a human being again. I don’t feel so floaty and brain fogged. 
As of last year, I’ve been researching celiac disease. I’ve ruled out other issues such as gallbladder and liver disease: I have no reason to think my symptoms are caused by these. Never once had an issue with either organ. These symptoms only happen when I eat gluten. When I don’t eat gluten, the symptoms slowly dissipate. 
I’m really scared. I don’t know if I’ve caused irreparable damage to my body. I’ve been told so many times it was all just due to stress. 
I have other conditions such as PCOS and thyroid issues. I’m scared that due to being overweight no one will take me seriously. 
I’ve also experienced rapid weight loss AND gain with these conditions. It’s had a very bad effect on my body. I have pictures of myself where my face is so sunken in and dead I feel terrified for myself. Then other times, I’m bloated and moon-faced. It’s messed with my body image so much. My insecurities are consuming me. 
Im so used to being gaslighted about these symptoms, or even just gaslighting myself. Did anyone else develop or somehow notice celiac symptoms later in life? I feel so alone. I have so many stomach and head problems. It’s so debilitating. I already had disabilities and CI, but this is really my breaking point. 
I’m ashamed and embarrassed of these symptoms. My stomach problems got in the way of my education. I spent the entirety of my senior year with chronic (yellow/pale colored) diarrhea. I could barely even function. I tried to tell people about how awful my stomach problems had gotten and no one would listen to my concerns. I’d go to school feeling like I was rotting.

there’s no way in heck (can I say h-e-double hockey sticks here??) this is anything other than celiac, right? how else would these symptoms just randomly dissipate when I don’t consume gluten? Im getting a celiac blood test on the 30th, but I’m so scared. What if it’s too late and there’s already too much damage? What if I’ve had this forever and my body has just sorta been slowly rotting? Im so anxious. I have so many vitamin deficiencies and they make me anxious, irritable, and depressed. I have no balance and I’m so tired. Chronic fatigue and anxiety is consuming me whole  

also, I’m very scared about eating gluten for the blood test. It’s already done so much damage to my body. It hurts so much when I eat it. It’s pain that can’t be described in words, it’s like multiple kicks in the gut with spiked boots.

sorry if this is all discombobulated, I have pretty bad brain fog right now and haven’t slept. I can’t sleep because I’m so worried about all of this. it’s also very long, but I just have so many worries about all of this. I’m really scared. I don’t want cancer or neurological or bone problems. I already have so many other health conditions, I just want to function like other teenagers my age do. It hurts so much. I feel so alone. 

if anyone relates or has any advice, please reply if you want. I just want to know I’m not alone in this. 

[cristiana]

Hello there and welcome to the forum,

I am so glad you have got in touch because a lot of us here will be able to identify with the fear and uncertainty you are currently going through.

So many of the symptoms you list - ulcers, diarrhea, mucus, weight loss, abdominal pain etc are things that many of us have experienced before diagnosis, and it can be a very difficult time having to have blood tests and all the waiting for answers. 

In answer to your question, you can definitely get this later in life.  In my own case I was in my mid-40s before I was diagnosed - this thing can hit people at any age.  My gastroenterologist has even diagnosed a lady in her 90s.

It certainly sounds as if you could have have coeliac disease.  Or possibly Non-Celiac Gluten Sensitivity, which is a condition where you react against gluten but your gut is not actually damaged in the same way a coeliac's gut is.   

Blood tests and a follow-up endoscopy are the  route for diagnosing coeliac disease but the issue with these is you do need to go on what they call a 'gluten trial' - two slices of normal bread or the equivalent for about six weeks in order to get a reaction for the blood test, or a two weeks' gluten trial for an endoscopy.   That said, it sounds as if doing a gluten trial would be very difficult for you because it makes you so unwell, so who could blame you for not doing one.   But bear in mind that if there is no or little gluten exposure, your tests could come back negative even if you are a coeliac.

We tend to encourage people living in some parts of the world, such as the UK, to do a trial if they can because the government puts lots of free healthcare support in place for diagnosed coeliacs, but this may not be the case where you live.  Whatever you decide to do, do stick around here because if gluten is an issue for you, there are lots of people here who can help.

Out of interest, are they any other people in your family who have coeliac disease?   Have you been offered a genetic test to see if you are carrying the genes?

Cristiana

Edited June 24, 2023 by cristiana

[confusedandsick]

1 hour ago, cristiana said:

Hello there and welcome to the forum,

I am so glad you have got in touch because a lot of us here will be able to identify with the fear and uncertainty you are currently going through.

So many of the symptoms you list - ulcers, diarrhea, mucus, weight loss, abdominal pain etc are things that many of us have experienced before diagnosis, and it can be a very difficult time having to have blood tests and all the waiting for answers. 

In answer to your question, you can definitely get this later in life.  In my own case I was in my mid-40s before I was diagnosed - this thing can hit people at any age.  My gastroenterologist has even diagnosed a lady in her 90s.

It certainly sounds as if you could have have coeliac disease.  Or possibly Non-Celiac Gluten Sensitivity, which is a condition where you react against gluten but your gut is not actually damaged in the same way a coeliac's gut is.   

Blood tests and a follow-up endoscopy are the  route for diagnosing coeliac disease but the issue with these is you do need to go on what they call a 'gluten trial' - two slices of normal bread or the equivalent for about six weeks in order to get a reaction for the blood test, or a two weeks' gluten trial for an endoscopy.   That said, it sounds as if doing a gluten trial would be very difficult for you because it makes you so unwell, so who could blame you for not doing one.   But bear in mind that if there is no or little gluten exposure, your tests could come back negative even if you are a coeliac.

We tend to encourage people living in some parts of the world, such as the UK, to do a trial if they can because the government puts lots of free healthcare support in place for diagnosed coeliacs, but this may not be the case where you live.  Whatever you decide to do, do stick around here because if gluten is an issue for you, there are lots of people here who can help.

Out of interest, are they any other people in your family who have coeliac disease?   Have you been offered a genetic test to see if you are carrying the genes?

Cristiana

Hi, thanks for your response. I appreciate it! 

To answer your question, my family is notoriously known for never getting their health issues looked at. However, I do know that bowel issues run in both sides of my family. Just not to the extent that I have. 
What’s this two week gluten trial? I don’t think I could handle 6 weeks without more damage to my gut, but maybe I could handle 2. I do want a diagnosis just so my doctors will actually take me seriously, because they honestly never do. I had to beg to get tested for PCOS for 3 years. 
I honestly can’t tell whether or not it’s just an allergy, but I suspect celiac because it seems to be taking a serious toll on my gut. Also, is this thing about celiac being related to thyroid true? I do wonder if that explains my case. I’m new to all of this stuff, so I have a lot of questions. Thank you for answering many of them, I’ve been suffering for this alone for a long time. I haven’t told many people I suffer from this out of embarrassment and self-doubt. 

[trents]

Welcome to the forum, confusedandsick!

Normally, there are two stages of testing done to arrive at a celiac diagnosis. The first stage is a blood test to look for certain antibodies that are associated with celiac disease. These antibodies are produced by the inflammation that celiac disease causes to the small bowel lining. Celiac disease is not a food allergy but an autoimmune disorder that attacks the "villi" that line the small bowel. This is the area of the intestinal track where all of the nutrition in our food is absorbed. Celiac disease wears down the villi, reducing the their surface area and efficiency of absorption which, in turn, typically results in nutritional deficiencies over time. The Mayo Clinic guidelines for a "gluten challenge" (i.e., going back on gluten after being gluten free) is the consumption of two slices of wheat bread (or the gluten equivalent) daily for 6-8 weeks leading up to the day of the blood draw. Less than that may result in lower test values that puts you in the negative result range.

If the antibody testing throws some positives, the second stage of testing is an endoscopy with biopsy to microscopically check for damage to the villi that line the small bowel. Samples are taken from the small bowel lining and sent to a lab for analysis. This is the "gold standard" for celiac diagnosis. The Mayo Clinic guidelines for the pretest gluten challenge for this second stage is only two weeks of daily consumption of an amount of gluten equivalent to two slices of wheat bread leading up to the day of the procedure. So, if you could find a GI doc willing to skip the first stage antibody testing and move right to the biopsy, it would be less traumatic.

Do you do your own cooking? I ask because I want to challenge your statement about the expense of eating gluten free. You don't have to purchase expensive "gluten free" labeled food items in order to eat gluten free. There are plenty of main stream food items that are naturally gluten free. But you would need to be willing to focus on fresh meat, fresh veggies and fruit (or frozen), be willing to eat simple things like that and do your own cooking so that you have control over the possibility of CC (cross contamination) that typically occurs when eating out. I know this is not what an 18 year old wants to hear.

As Cristiana mentioned, there is also the possibility of NCGS (Non Celiac Gluten Sensitivity) for which there are no specific tests  because it does not damage the gut like celiac disease does. But the two share many symptoms in common and NCGS is 10x more common than celiac disease. Both require strict avoidance of gluten. However, given your thyroid disease and the range of symptoms you describe, as well as the family history of bowel issues, my money would be on celiac disease.

I would also strongly recommend you invest in an adult multivitamin, a high potency B-complex, sublingual B12, 5000-10,000 IU of D3, magnesium glycinate and zinc to address the probable nutritional deficiencies you have developed that are fueling some of your physical problems and probably also your mood struggles. Make sure all vitamins and supplements are gluten free. Costco's Nature Made and Kirkland Signature products are good choices and they will clearly state on the bottle if they are gluten free. Most of them are. Genetic testing to see if you carry the genetic potential for celiac disease would be wise. You can get that for around $200 through companies like 23andMe.

Edited June 24, 2023 by trents

[confusedandsick]

52 minutes ago, trents said:

Welcome to the forum, confusedandsick!

Normally, there are two stages of testing done to arrive at a celiac diagnosis. The first stage is a blood test to look for certain antibodies that are associated with celiac disease. These antibodies are produced by the inflammation that celiac disease causes to the small bowel lining. Celiac disease is not a food allergy but an autoimmune disorder that attacks the "villi" that line the small bowel. This is the area of the intestinal track where all of the nutrition in our food is absorbed. Celiac disease wears down the villi, reducing the their surface area and efficiency of absorption which, in turn, typically results in nutritional deficiencies over time. The Mayo Clinic guidelines for a "gluten challenge" (i.e., going back on gluten after being gluten free) is the consumption of two slices of wheat bread (or the gluten equivalent) daily for 6-8 weeks leading up to the day of the blood draw. Less than that may result in lower test values that puts you in the negative result range.

If the antibody testing throws some positives, the second stage of testing is an endoscopy with biopsy to microscopically check for damage to the villi that line the small bowel. Samples are taken from the small bowel lining and sent to a lab for analysis. This is the "gold standard" for celiac diagnosis. The Mayo Clinic guidelines for the pretest gluten challenge for this second stage is only two weeks of daily consumption of an amount of gluten equivalent to two slices of wheat bread leading up to the day of the procedure. So, if you could find a GI doc willing to skip the first stage antibody testing and move right to the biopsy, it would be less traumatic.

Do you do your own cooking? I ask because I want to challenge your statement about the expense of eating gluten free. You don't have to purchase expensive "gluten free" labeled food items in order to eat gluten free. There are plenty of main stream food items that are naturally gluten free. But you would need to be willing to focus on fresh meat, fresh veggies and fruit (or frozen), be willing to eat simple things like that and do your own cooking so that you have control over the possibility of CC (cross contamination) that typically occurs when eating out. I know this is not what an 18 year old wants to hear.

As Cristiana mentioned, there is also the possibility of NCGS (Non Celiac Gluten Sensitivity) for which there are no specific tests  because it does not damage the gut like celiac disease does. But the two share many symptoms in common and NCGS is 10x more common than celiac disease. Both require strict avoidance of gluten. However, given your thyroid disease and the range of symptoms you describe, as well as the family history of bowel issues, my money would be on celiac disease.

I would also strongly recommend you invest in an adult multivitamin, a high potency B-complex, sublingual B12, 5000-10,000 IU of D3, magnesium glycinate and zinc to address the probable nutritional deficiencies you have developed that are fueling some of your physical problems and probably also your mood struggles. Make sure all vitamins and supplements are gluten free. Costco's Nature Made and Kirkland Signature products are good choices and they will clearly state on the bottle if they are gluten free. Most of them are. Genetic testing to see if you carry the genetic potential for celiac disease would be wise. You can get that for around $200 through companies like 23andMe.

Thank you so much for this advice. 
I want to try that biopsy because I’m really afraid of what a month of gluten will do to me. Thank you for educating me about this alternative. I have actually thought about genetic testing in the past, but I don’t have much money right now as I’m a broke college student. I would be willing to save up for it because going back to eating gluten full-time, especially two pieces of bread a day, really scares me. I had slight contamination the other day and was out for the entire day.

I currently have a dietician who focuses on my bowel issues and PCOS, she talked to me about the same exact thing you’re talking about. Not buying specific gluten-free foods, just simply replacing foods in my diet that are naturally gluten free. I suppose my issue right now is that my family is financially unstable so we don’t have food at home. Then when we do… it’s bread and bagels. I basically buy my own food all the time because even when my family does get food, they forget I can’t eat gluten. It’s… very costly to say the least. I try to just find gluten free food that isn’t specially made for celiacs and people with gluten allergies. 

Now that I’m thinking about it, I suppose this calls for some sort of family meeting where I discuss the importance of this. My mom keeps claiming that it’s all in my head, she doesn’t seem to understand how bad it is. I guess that’s partially on me, I haven’t told anyone the extent of it out of shame and embarrassment.
also, the line “I know this is not what an 18 year old wants to hear.” made me laugh, you’re very right about that. It sucks having to miss out on a bunch of stuff and not really being able to eat out. It’s so common to be eating out with friends, cooking together, etc. but I have to be very cautious about everything. 😅 It’s a little restrictive compared to my peers, but necessary.

I want to live a healthy, happy life with my current partner. After the diagnosis, I’m going to continue following forums and newsletters like this one. Educating myself more on this disorder, finding the right alternatives, knowing what supplements I need, etc. is very important to me. I’m going to cut out gluten entirely — no cheating! The pain is never worth it. 
Thank you guys! I’m so emotional, no one has ever listened to me about this topic. I’ve never met anyone else with celiac disease either so I felt very alone. Thank god for forums like this one, because before I felt so isolated and scared. I feel a lot more hopeful. 

[trents]

As you indicate, one value of this forum is that it provides a supportive community to help with the "feeling so all alone" thing.

I certainly would entertain the idea of sitting down with the family and having a heart to heart talk with them about your need to be gluten free. I would recommend you put together a handout explaining what celiac disease is and how it actually damages body systems. There are pictures online of celiac blunted small bowel villi compared to what a healthy small bowel lining looks like. So, something concise with bullet points and pictures.

Having said that, there is still a good possibility that some or all of your family members will be skeptical and uncooperative. Steel yourself up for this. I'm going to link some resources that address the emotional/psychological side of celiac disease as well as one that is sort of a primer for getting a handle on gluten free living.

https://vimeo.com/486284734

https://www.celiac.com/celiac-disease/gluten-centric-culture-the-commensality-conundrum-chapter-2-ideologies-in-our-gluten-centric-society-r5576/?tab=comments#comment-21294

https://celiac.org/about-the-foundation/featured-news/2016/08/20-things-you-might-not-know-about-celiac-disease/

https://www.verywellhealth.com/villous-atrophy-562583

[cristiana]

Great advice from @trents.  Sorry for the late reply but living in the UK the different time zones get in the way sometimes!

The family meeting is a great idea, as is supplementation.  Take the best you can afford.

I found vitamin B supplements a game-changer when I was first ill.   Sublingual are best, but if they are too expensive for you I found Berocca helped a lot. 

I didn't know what was wrong with me at the time but  started taking Berocca in case it helped.   I had terrible anxiety and found just a few hours I felt much calmer. 

Google "naturally gluten free" and make a list of the things that are gluten free and appeal to you.  Also, I think a food diary could be helpful to identify any problem foods.

Keep in touch.

   

 

[KathleenMK]

Confused and Sick, God bless you, it must be extremely stressful dealing PCOS issues and gut problems at the same time. I know when i was going through ovarian issues that led to a total hysterectomy some of my symptoms were like the ones my husband is now having with Celiac's. No matter what is causing the abdominal pains, stress makes it all hurt more. I am still learning here about the gluten issues, But i hope I can give you a bit of hope with ideas to handle the stress and pain.

I know mindfullness and deep breathing are all trendy now, but seriously they can help with pain and tension. So when it all gets overwhelming take 3 or 4 slow deep breathe. Like in Natural childbirth, focusing on breathing doesn't stop the pain but gives your body oxygen and energy to handle it and calms your nerves. ( good before a college exam too.)

Remember to stay hydrated. Chugging icy water after hard exercise ( which also  can help stress) will  add to cramps so sip slowly. Save money and calories by sipping water with just a little fruit juice for flavor instead of sodas. Things like Emergen -C can offer a little fizz with some vitamins for handling stress. Intermittent fasting is a popular diet method which might give your gut a rest by having a longer time in between dinner and breakfast. It  has helped me but I am no expert on it, so look for more details on line.

I remember not sleeping much in college, but try to get enough rest will help you have energy to handle health issues and life stresses. 

I know you  can find more expert advice, but  I hope my two cents will help you take care of yourself while you learn to manage a gluten free life.

[Kurlykaitlyn]

On 6/24/2023 at 1:38 AM, confusedandsick said:

I’m sorry that this will be vent-ish, I just want to know if anyone has similar experience. 
Hi, I’m female and 18 years old. For the past few years, I’ve been suffering extreme bowel issues. Constant gas, nausea, bloating, chronic diarrhea. Around a year and a half ago, I noticed something off with my stool. It had become yellow with a “greasy” “mucus-y” texture (sorry I know that’s tmi, but I’m sure you guys get it.) I had constant lower/middle abdomen pain. It was so bad that I would often be hugging my stomach tight, I was in so much pain I just wanted to sob. I spend almost every day in constant pain and nausea. I feel lightheaded, dizzy, and experience a lot of heartburn and indigestion. I vomit all of my food back up in my mouth. Recently, I was in the car with a friend and had to open the car door just to throw up all over the ground. Also, whenever I eat gluten I get these crazy canker sores inside of my mouth. They don’t seem to be triggered by anything other than that. I also experience a lot of dermatitis and rashes after I consume gluten. These symptoms are so debilitating, the pain is unbearable. I just want to sleep forever sometimes so I don’t have to bare it. 
I’m done with these symptoms. I haven’t been able to avoid some contamination and accidental digestion of gluten products, but I’ve tried to get rid of them as much as possible. Living on a gluten-free diet is so expensive. But ever since I started getting rid of the gluten in my diet, I feel like a human being again. I don’t feel so floaty and brain fogged. 
As of last year, I’ve been researching celiac disease. I’ve ruled out other issues such as gallbladder and liver disease: I have no reason to think my symptoms are caused by these. Never once had an issue with either organ. These symptoms only happen when I eat gluten. When I don’t eat gluten, the symptoms slowly dissipate. 
I’m really scared. I don’t know if I’ve caused irreparable damage to my body. I’ve been told so many times it was all just due to stress. 
I have other conditions such as PCOS and thyroid issues. I’m scared that due to being overweight no one will take me seriously. 
I’ve also experienced rapid weight loss AND gain with these conditions. It’s had a very bad effect on my body. I have pictures of myself where my face is so sunken in and dead I feel terrified for myself. Then other times, I’m bloated and moon-faced. It’s messed with my body image so much. My insecurities are consuming me. 
Im so used to being gaslighted about these symptoms, or even just gaslighting myself. Did anyone else develop or somehow notice celiac symptoms later in life? I feel so alone. I have so many stomach and head problems. It’s so debilitating. I already had disabilities and CI, but this is really my breaking point. 
I’m ashamed and embarrassed of these symptoms. My stomach problems got in the way of my education. I spent the entirety of my senior year with chronic (yellow/pale colored) diarrhea. I could barely even function. I tried to tell people about how awful my stomach problems had gotten and no one would listen to my concerns. I’d go to school feeling like I was rotting.

there’s no way in heck (can I say h-e-double hockey sticks here??) this is anything other than celiac, right? how else would these symptoms just randomly dissipate when I don’t consume gluten? Im getting a celiac blood test on the 30th, but I’m so scared. What if it’s too late and there’s already too much damage? What if I’ve had this forever and my body has just sorta been slowly rotting? Im so anxious. I have so many vitamin deficiencies and they make me anxious, irritable, and depressed. I have no balance and I’m so tired. Chronic fatigue and anxiety is consuming me whole  

also, I’m very scared about eating gluten for the blood test. It’s already done so much damage to my body. It hurts so much when I eat it. It’s pain that can’t be described in words, it’s like multiple kicks in the gut with spiked boots.

sorry if this is all discombobulated, I have pretty bad brain fog right now and haven’t slept. I can’t sleep because I’m so worried about all of this. it’s also very long, but I just have so many worries about all of this. I’m really scared. I don’t want cancer or neurological or bone problems. I already have so many other health conditions, I just want to function like other teenagers my age do. It hurts so much. I feel so alone. 

if anyone relates or has any advice, please reply if you want. I just want to know I’m not alone in this. 

Oh honey, first I’m so sorry for the amount of pain and stress you’re experiencing. 
I believe you and I felt much the same growing up. I wasn’t diagnosed celiac until age 24. I was constantly sick as a child and adolescent. My mother dismissed me and always said I’m fine. I had similar feelings to you so what you’re feeling really is understandable. 
it can all be very overwhelming when you feel at war with your body. I hope you do get some tests and results soon. If you’re told you’re not celiac, I would still recommend strictly gluten free diet due to your symptoms and awareness of gluten making you more sick. 
gluten free doesn’t have to be expensive. Rice, oats, bananas, beans and legumes, and various veggies are just a few examples of affordable healthy options. I highly recommend also to keep a journal of symptoms and maybe even what foods you’re eating for a period. It might help you gain more awareness around what you’re taking in having an affect on your physical well being. 
i struggled with depression and severe anxiety before diagnosis. It is possible to heal and recover, but it takes time. Find someone you talk to about your feelings and health concerns, and in the least you can keep sharing and posting here. This community is very supportive. 🩷 best wishes to you 

[confusedandsick]

On 6/25/2023 at 10:24 PM, Kurlykaitlyn said:

Oh honey, first I’m so sorry for the amount of pain and stress you’re experiencing. 
I believe you and I felt much the same growing up. I wasn’t diagnosed celiac until age 24. I was constantly sick as a child and adolescent. My mother dismissed me and always said I’m fine. I had similar feelings to you so what you’re feeling really is understandable. 
it can all be very overwhelming when you feel at war with your body. I hope you do get some tests and results soon. If you’re told you’re not celiac, I would still recommend strictly gluten free diet due to your symptoms and awareness of gluten making you more sick. 
gluten free doesn’t have to be expensive. Rice, oats, bananas, beans and legumes, and various veggies are just a few examples of affordable healthy options. I highly recommend also to keep a journal of symptoms and maybe even what foods you’re eating for a period. It might help you gain more awareness around what you’re taking in having an affect on your physical well being. 
i struggled with depression and severe anxiety before diagnosis. It is possible to heal and recover, but it takes time. Find someone you talk to about your feelings and health concerns, and in the least you can keep sharing and posting here. This community is very supportive. 🩷 best wishes to you 

Thank you for all of the ideas! Your story sounds very similar to mine. Now that I went to the doctor, people are slowly beginning to believe my struggles. I think that they’re starting to understand it’s serious now. I was in the same place, I was sick near constantly. I couldn’t find out why. I’m so glad to hear you recovered from a lot of the mental health struggles that come with having diseases like this. It makes me feel hopeful!

On 6/25/2023 at 8:41 PM, KathleenMK said:

Confused and Sick, God bless you, it must be extremely stressful dealing PCOS issues and gut problems at the same time. I know when i was going through ovarian issues that led to a total hysterectomy some of my symptoms were like the ones my husband is now having with Celiac's. No matter what is causing the abdominal pains, stress makes it all hurt more. I am still learning here about the gluten issues, But i hope I can give you a bit of hope with ideas to handle the stress and pain.

I know mindfullness and deep breathing are all trendy now, but seriously they can help with pain and tension. So when it all gets overwhelming take 3 or 4 slow deep breathe. Like in Natural childbirth, focusing on breathing doesn't stop the pain but gives your body oxygen and energy to handle it and calms your nerves. ( good before a college exam too.)

Remember to stay hydrated. Chugging icy water after hard exercise ( which also  can help stress) will  add to cramps so sip slowly. Save money and calories by sipping water with just a little fruit juice for flavor instead of sodas. Things like Emergen -C can offer a little fizz with some vitamins for handling stress. Intermittent fasting is a popular diet method which might give your gut a rest by having a longer time in between dinner and breakfast. It  has helped me but I am no expert on it, so look for more details on line.

I remember not sleeping much in college, but try to get enough rest will help you have energy to handle health issues and life stresses. 

I know you  can find more expert advice, but  I hope my two cents will help you take care of yourself while you learn to manage a gluten free life.

Thank you so much. Honestly, I always thought meditation and mindfulness wasn’t for me when I was younger. Recently, I’ve been using it a lot to help with pain. You are so right, it is so helpful! I tend to also use grounding skills. It can be hard to focus on anything but the pain sometimes, especially when it becomes overbearing… 

also yes yes yes!!! to the vitamins! I’ve started to buy some more vitamins and plan on taking them daily. With malabsorption, I need to be very careful! Also, you’re very right about rest. I developed sleep problems due to the stomach pain I was having. When I don’t sleep, I’m a total wreck. I’ve found the perfect medicine that helps me go to sleep, I just need to make sure I always have it on hand. 

also: an update on this thread! (I will probably mark this as a solution if it lets me!)

I ended up having to go with the standard celiac blood test. I am very scared about consuming it again, but I’m going to take as much Claritin and Pepto Bismol as possible and hope for the best. 🙏 My doctor told me my symptoms are strikingly similar to celiac disease/gluten allergy symptoms. So, after a crap ton of rampant self-advocacy people are starting to realize the severity of all of this. Also, PCOS has gotten better and I’m steadily losing weight.
This is the beginning of my road to recovery! Finally!