New to Forum - Hard Time Coping with Gluten Intolerance

[lyndsay.d]

Hi everyone,

   So I'm Lyndsay, I'm writing in this forum because my boyfriend thinks that it would be beneficial for me to talk to people who are struggling with the same gluten issues as I am.  I am not a diagnosed Celiac, but after realizing that I'm definitely intolerant to gluten, I cut it out of my diet, and that was about 8 months ago.  

   I know I have problems with gluten--gas and pain after eating gluten followed by irregular bowel movements, I felt mentally foggy before I cut it out of my diet, I have pretty weak nails and hair so I don't think I'm absorbing nutrients very well, my energy level is also shot all the time potentially because of poor absorption, I'm lactose-intolerant, I have very soft teeth and have had over 20 cavities (I'm only 24 and I do practice good oral hygiene), and I'm really depressed and moody a lot of the time.

   My boyfriend was a research assistant to a professor studying Celiac disease so he knows a good bit about it.  He tells me that my energy levels and moodiness are due to poor absorption because Celiacs have damaged intestines and don't absorb nutrients well.  He ties all of my health issues, including my depression, back to my digestive issues and Celiac.  I just have a really hard time telling people that I'm Celiac because I was never diagnosed.  I feel like I'm lying if i say I'm Celiac but if I say I'm gluten-intolerant or can't have gluten, people look at me like I'm doing the fad diet.  It's really frustrating.

   I have been missing a good bit of work because I will randomly get nauseous and weak feeling at work.  It's really hard because I need to make up the hours that I miss so I'm working longer days which is difficult when you have no energy.  I want to tell my bosses that I'm an undiagnosed Celiac and that I'm missing work due to digestive issues that all tie back to Celiac.  Is that even true?  Can I even say that or is that bull s*** that my boyfriend convinced me of?

   I know for sure that I have problems with gluten though.  I just feel really alone because the one other female and person my age that I work with (I work at a 7-person firm) is gluten-free because gluten makes her arthritis act up.  So every time I talk about my issues with gluten and say I think I'm Celiac, she tells me no, I'm not Celiac, that she knows someone who's Celiac and she doesn't think I sound like them.  It's like um ok you have no idea what I go through and feel on a daily basis, nor do you know how I feel when I get glutened.  So I feel like I can't tell my bosses I'm Celiac because that one coworker makes me feel doubtful of myself and my possible disease.  She makes me feel like I am lying when I say I'm Celiac.

   Is anyone else struggling with these same issues?  I know I sort of vented a lot here.  Could my energy levels and depression actually be due to Celiac or gluten intolerance?  Is it a lie to tell people I'm Celiac?  I guess I'm just looking for some assurance and support..  Thank you to whoever reads this and I hope to hear from someone.

[kareng]

I wish your boyfriend hadn't diagnosed you.  If he really was studying Celiac, he would know that isn't the way to be diagnosed.  He would also understand the value of an official diagnosis for any autoimmune disorder. 

 

If you have been gluten-free for 8 months, perhaps some of these issues are not from gluten?  Perhaps you have some other issue that is not being addressed because you were talked into a Celiac diagnosis?

For work, you would need an actual diagnosis to get any type of official medical leave.  I don't know how they feel about you being sick a few hours here and there.  That would be something to discuss with your supervisor.  You could explain that you don't know what is wrong but you are working on it?  Depending on the job, company and supervisors good nature, you might be able to have a more flexible schedule.

edit to add- I don't mean to sound harsh.  I just don't want you to miss what might be the real problem. 

Edited June 1, 2016 by kareng

[MrsChoplin]

I'm sorry you are so ill, Kareng's comment above is everything I would have said.

[frieze]

yup, not EVERYTHING is related to gluten.  you really need to get in with a gi doc and get worked up.  are you being REALLY gluten free, totally, absolutely?   good luck which ever way life takes you.

[cyclinglady]

You joined the forum because your boyfriend told you to.  You went gluten free because your boyfriend told you have celiac disease.   Gee, see a pattern here?  About the boyfriend?  

 I am not trying to sound flippant or harsh.  You need to stand your ground, be your own advocate and get some real medical help.  You could have a variety of medical problems that may or may not even be linked to celiac disease.

 

 

[Jmg]

 

 Is anyone else struggling with these same issues?

Yes! 

 

 

 Could my energy levels and depression actually be due to Celiac or gluten intolerance?

Yes! 

 

 Is it a lie to tell people I'm Celiac?  

This one isn't quite as clear cut. You can't say that you've been diagnosed celiac because you've not given the medical community it's chance to diagnose. That said, it's only a white lie if you're saying it to ensure someone takes proper precautions when preparing your meal. My endoscopy for example, was negative for celiac, but if I'm in a restaurant I have no problem self declaring because I think my diagnosis may have slipped through the cracks so to speak and regardless,  I know gluten causes me serious harm, so self preservation kicks in!

 

  I guess I'm just looking for some assurance and support.. 

You have come to the right place!  However, the really great thing about this forum is that people won't just tell you what you want to hear but sometimes what you need to   

At present you're surrounded by doubt and working on inference and speculation, however well intentioned or knowledgeable. If you're happy to commit to a lifetime gluten free on this level of evidence, then go for it, but be aware you're risking not finding another cause and/or a lot of hassle getting food without substantive evidence. At 24 that's a lot of years of missed delicious cheesecake if you're wrong!

The alternative is the medical route and a potentially unpleasant few weeks undergoing a gluten challenge prior to testing. At the end of it you may, like me, not get the diagnosis you're expecting, but then the option to go gluten free is still available to you. 

My suggestion would be to make the best notes you can of your symptoms, include anything about your health in general (how often you get colds, mouth ulcers? skin issues?) and go and see your doctor. Tell them you've been gluten free for 8 months with a big impact and that you'd like to establish whether or not it's a problem. I'd also start keeping a food diary, what you ate, when and how you feel. Could prove useful, particularly should you start a challenge.

Good luck whatever you decide, you are not alone as the song goes 

[squirmingitch]

Reason to go for an official diagnosis is your future & that of any kids you may have. Celiac is genetic. If you do have celiac then all first degree relatives should be tested every 2 years in the absence of symptoms & immediately if symptoms present. Celiac can present at any age. It will be MUCH easier for your kids & other relatives to get tested if there is a dx'd celiac in the family. Your kids will NEED an official dx in order to be protected in school, college, etc....

Now let's think ahead a little bit. Your present boyfriend may not always be your boyfriend. What if you date, live with or marry another guy? How is he going to feel about your (your boyfriends)  diagnosis of you? He may doubt a great deal. This will cause strife. He may not support your gluten-free lifestyle. He may not sympathize. And if you have kids together, he may not be on board for getting them tested or them being gluten-free. He may in short, think you're a nut job. Just sayin'.......

Just some things to think about.

[Veteranchuck]

I have just become satisfied that gluten causes me to suffer from vertigo. After eating french bread for several months with my dinner every evening I had a couple of serious bouts of vertigo. For some reason, after considering what changes I had made in my diet, I zeroed in on gluten. After a couple of doctors confirmed that the vertigo was not caused by problems in the ear they lost interest in looking for any other causes. Anyhow, after going gluten free for a couple years I asked my wife to make one of our favorite dishes, a cabbage casserole made with Campbells mushroom soup. Now any gluten intolerant person should know that all Campbells soups contain gluten. Any how, that night I woke up in the middle of the night to go to the bathroom and experienced a mild form of vertigo. Two nights later I ate the leftovers from that casserole and slept really late and when I got up I suffered a more sever vertigo than the night before, and felt sleepy all day. I have experienced that gluten intolerance is cumulative. The longer I ingest gluten the more extreme the vertigo gets. The grocery stores, like Cub Foods, now have gluten free aisles and the products are getting better. Many other products are now marked "gluten free" if their products are normally gluten free.

Edited October 7, 2019 by Veteranchuck
Improve writeup

[DMcR]

Hi, 

lyndsay.d I hope you got the right information and are doing well (I know it's an old thread). I have similar issues, severe bloating constipation, diarrhea fatigue, mood swings, yada yada. I went to my doctor (uk) about 4 years ago, who referred me to a specialist at the hospital, had ultra sound scans etc, they dismissed me and said I would need to take senacot for, possibly for the rest of my life. 

My symptoms have been getting worse, so found a dna intolerance test online (was on offer £30). This came back with quite a few things top of the list was cream and be careful with dairy, then wheat, wheat flour, corn, garlic, chicken, fish, to name a few. It also mentioned my hay-fever being fairly bad, which it is. I have took gluten out of my diet and within days feel so much better, more energy, feel mentally sharper my weight has equalised as it used to yoyo. 

I am going to take my findings to my doctor eventually, maybe I need to find out if I am celiac? My son had a severe milk intolerance for the first 3 year of his life which seems to have gone. 

It is very hard to keep away from all of the things my list says, but if I have any wheat it's like I've swallowed a basketball within a couple of hours, cheese and garlic give me diarrhea and a bowl of cornflakes with milk bloats me too. It is frustrating when I love garlic bread with cheese etc. 

Anyway, I just wanted to tell my story and have a little moan to people who know what I'm talking about. The UK is getting better at free from sections in supermarkets but it's all more expensive, just trying to cook more. 

Thanks for listening

 

[PeteEurope]

I wonder if you have specialist in other countries who can test if you have celiac or gluten intelorance, etc. in holland we have a specialism which we call mesologie. the specialist who studies this can immediately see how your reaction is for celiac, gluten, etc. Allergies and intolerances, food hypersensitivity such as cow's milk, lactose, nickel. Allergies related to immune system. Also persistent complaints with celiac disease. 

Mesologie helps people to know what there allergies and intolerances are when they are having problems.