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Whats Should I Do?

jasonD2

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jasonD2 Experienced
jasonD2
Posted

Ive posted here various times and you all probly think i'm nuts, and you might be right, but Ive reached a point where I am just clueless about what I should do.

I have been off gluten for almost 2 yrs and never had a celiac test cause I am stubborn and dont want to have the diagnosis. I had a slight positive on a stool anti-gliadin assay and I have 1 of the 2 celiac genes. My symptoms have improved a little but I have many other sensitivities so I dont know what food causes what symptom.

Although I say I have been gluten free, i havent been truly 100% gluten free because I dont tell wait staff that I have an allergy..I just go to "safe" restaurants, call in advance and speak with kitchen managers and just make a selection at the restaurant based on all my research. Usually I'm fine but I have made several mistakes during the past 2 yrs and have learned what to do and what not to do. Fortunately or unfortunately I dont get severe symptoms that a lot of you might get when u accidentally consume gluten; I dont know if im a silent or asymptomatic celiac, have mild celiac, or non-celiac gluten intolerance.

In any case, the whole not knowing component is really whats driving me nuts. If i have celiac it would almost be a relief for me since i would know once and for all and take the necessary steps, however without a diagnosis its easy for me to slip or just not pay that much attention to what I eat. For example I may go to bonefish grill and order something that is on the gluten free menu but never tell the waiter that I am allergic.

So the bottom line is I just dont know what to do now. I dont want to eat gluten for 3 months, get ill and risk potentially severe damage just to get the tests. As you can see i'm caught between a rock and a hardplace here.

To make matters worse I have a business trip in France in October and am absolutely dreading it because the French dont really cater to folks like us; im seriously afriad im gonna starve to death while im there. I already tried to back out of the trip but my boss forced me & said i'd be the only person in the entire company not attending & that its important for me to be there. So i agreed to go, made all the travel arrangements but I may just cancel at the last minute & say there was a death in the family-- but on the flip side i would be missing out on an amazing opportunity.

Sometimes I really wish a meteor would strike my house and just end it all in a flash :(

I know this is long but I would very much appreciate some kind words and constructive feedback

Regards,

jason

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ravenwoodglass Mentor
ravenwoodglass
Posted
Ive posted here various times and you all probly think i'm nuts, and you might be right, but Ive reached a point where I am just clueless about what I should do.

I have been off gluten for almost 2 yrs and never had a celiac test cause I am stubborn and dont want to have the diagnosis. I had a slight positive on a stool anti-gliadin assay and I have 1 of the 2 celiac genes. My symptoms have improved a little but I have many other sensitivities so I dont know what food causes what symptom.

Although I say I have been gluten free, i havent been truly 100% gluten free because I dont tell wait staff that I have an allergy..I just go to "safe" restaurants, call in advance and speak with kitchen managers and just make a selection at the restaurant based on all my research. Usually I'm fine but I have made several mistakes during the past 2 yrs and have learned what to do and what not to do. Fortunately or unfortunately I dont get severe symptoms that a lot of you might get when u accidentally consume gluten; I dont know if im a silent or asymptomatic celiac, have mild celiac, or non-celiac gluten intolerance.

In any case, the whole not knowing component is really whats driving me nuts. If i have celiac it would almost be a relief for me since i would know once and for all and take the necessary steps, however without a diagnosis its easy for me to slip or just not pay that much attention to what I eat. For example I may go to bonefish grill and order something that is on the gluten free menu but never tell the waiter that I am allergic.

So the bottom line is I just dont know what to do now. I dont want to eat gluten for 3 months, get ill and risk potentially severe damage just to get the tests. As you can see i'm caught between a rock and a hardplace here.

To make matters worse I have a business trip in France in October and am absolutely dreading it because the French dont really cater to folks like us; im seriously afriad im gonna starve to death while im there. I already tried to back out of the trip but my boss forced me & said i'd be the only person in the entire company not attending & that its important for me to be there. So i agreed to go, made all the travel arrangements but I may just cancel at the last minute & say there was a death in the family-- but on the flip side i would be missing out on an amazing opportunity.

Sometimes I really wish a meteor would strike my house and just end it all in a flash :(

I know this is long but I would very much appreciate some kind words and constructive feedback

Regards,

jason

Jason, The most important aspect of your post is what I have highlighted. If you were gluten light or gluten free with slipups when the stool testing was done that combined with your symptom relief is a diagnosis. You may be one of us for whom gluten has a strong neurological component, from your posts I would bet on it. If you are accidentally getting gluten often enough you are keeping that neuro impact going. That would lead to the depression and anxiety you are often experiencing.

I don't think you are going to have as hard of a time in France as you fear you will. There are international dining cards that you can get, I think someone has given you a link or two on another thread if not do a search for them. That will help. If worst comes to worst on the trip there are always markets with fresh fruit and veggies and when dining out if you simply get plain chicken or a steak and a baked potato or plain rice, or a salad you should be okay.

I have a tendency to obsessive thought patterns, it is like a whirlpool for me. I start to think about something and it just keeps going on into a black hole that I have a hard time getting out of. I hate it as it is very hard to stop the process. I have eventually gotten to the point where I barely leave my house and once you get that far along it is really hard to get back. I am fighting though, with the aid of an antianxiety med and therapy sessions I hope to eventually be able to live a normal life. The reason why I am bringing this up is that I can see you heading in that same direction. You need to fight, and fight as hard as you can. Don't let these feelings get the best of you. Often our fears of what may happen far outweigh the reality. I have missed so much in the last few years, my childrens graduations, visits to see a very beloved daughter who lives a couple states away, even movies or walks in my neighborhood are no longer part of my life. I had to fight not only my reluctance to medicate but also with the doctors who kept wanting me to take antidepressants until I finally found a doctor and a therapist who acknowledged that my issue is anxiety and not depression. I am now on an antianxiety med, alprazolam (gluten-free form of Zanax) that has helped a lot. Perhaps something along those lines for a short time might help you also. Do you have a doctor who might give you a trial on a med of that type? It might help you in the short term enough to be able to stop worrying about the trip and to enjoy it when you get there.

jasonD2 Experienced
jasonD2
Posted
  • Author

No when I had the stool test done I was still on my regular gluten diet and as far as the depression/anxiety..Ive had that all my life...way before I developed stomach issues. I'm just prone to anxiety & depression.

I also forgot to mention that I had the celiac blood panel performed back in 2002, but that was right after I got hit with all my digestive trauma...it may have just taken a few years for the gluten intolerance (& other sensitivities) to develop. Also I had another stool test performed 2 weeks after i went Gluten free/Gluten light and the antibody was negative

So again, I'm really not sure what I have but I'm living in a constant state of fear every day of my life.

ravenwoodglass Mentor
ravenwoodglass
Posted

Jason, I suffered from depression and anxiety for over 30 years before gut issues developed. There are times when the neuro effects can hit us long before gut damage becomes apparent. The only way to be sure that it is not related to gluten is to become very strict with the diet for a while. My depression started in childhood and resulted in my trying to commit suicide at age 11. I was lucky and they were able to shock me back although I spent some time in a deep coma before I woke up. Back then the only indication that I had gut issues was that my stomach growled, alot. Please don't assume that your issues with mood are not related to gluten, not saying for sure that they are but the only way to know for certain is to be absolutely gluten free without risking CC issues for a month or two. You might be surprised how different the world looks to you once those antibodies stop attacking your brain.

Foxfire62 Newbie
Foxfire62
Posted

You have genes and a positive blood analysis that indicate you have a great likelihood of having celiac disease. If you do not wish to be biopsied, just assume you do, be very strict with your diet, and stop worrying.

I have celiac disease, and my intestines are beginning to work, and I'm still having complications despite my intestines slowly starting to heal and eating a strict gluten-free diet. I've been in and out of hospitals. Although I've been slowly getting better, I'm by far not perfect and still have good, bad, and inbetween days.

I wish I had your worry. Consider yourself lucky, stay on a strict gluten-free diet, and get on with your life.

no-more-muffins Apprentice
no-more-muffins
Posted

I'd recommend a strict gluten-free diet and a food journal to help you pinoint the other sensitivities you have. Or start on a diet of known safe items and re-introduce things and keep track. If you know that eating gluten makes you sick, and you don't want to do a gluten challenge (I wouldn't do it either) you should absolutely stick to a strict gluten-free diet. Your depression and anxiety problems are very likely connected at least in part to your gluten intolerance. Some of my first symptoms when I started getting sick were anxiety and depression, and know a lot of people with celiac have the same problems. The reaction to your foods can definitely mess with the seratonin in your gut.

So, go to France, and eat plain foods. You should be FINE! Dont' give up!

Mango04 Enthusiast
Mango04
Posted
To make matters worse I have a business trip in France in October and am absolutely dreading it because the French dont really cater to folks like us

Fortunately, that's not true. I was just in France and found great food to eat (all was completely gluten, dairy and soy-free). You'll be fine there.

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nora-n Rookie
nora-n
Posted

Yes, you can eat gluten-free in france. I am in Europe and almost all restaurants can fix you a safe meal. Only time this did not happen was a new place where I live with just foreigners working there...europeans do know about gluten (well, not so muchin Denmark i heard, but restaurants with waiters and professional cooks should be okay.

But you have to start telling the waiters you need a gluten-free meal, also so they can avoid the cc.

Here we have a lot of celiacs who do not get symptoms, or who do not get any huge symptoms.

I gather you never had the biopsy, but some enterlolab tests after you got some serious bowel issues, and a positive gene test, and you did not completely recover after going gluten-free because of occasional slip-ups.

Now the doctor teaching the group of young recently diagnosed celiacs where my daughter attended, he daid that it takes the villi four months to heal form a glutening.

So when you eat out once a month and get some gluten or some cc, you never really heal because that would take four months....

Sounds to me like you eat out a lot and something like that happened.

maybe the new pill, the AT-1000 would be ideal for someone like you....(it is still in some stage of clinical trials)

I am sorry you are so anxious. Just relax about the trip to france, you can start telling the waiters back home afterwards that you need a gluten-free meal, some slip-ups now in France won't matter so much, because you have gotten some gluten anyway all the time up until now. Just relax and start telling waiters over there, and then back at home afterwards.

I think the symptoms and the gene test mean something, and the slightly positive tests. (mine were negative, all of them)

nora

jasonD2 Experienced
jasonD2
Posted
  • Author

Unfortunately I am forced to eat out a lot - i work in sales and am on the road quite a bit. When I'm on my own I do fine and usually hit Whole Foods or PF Changs or somethin like that. But traveling with colleagues is what gets me everytime. They all know i'm picky w/ food and have dairy issues , but I never told them bout the gluten thing. Also I always have so much fun with them and when im at the restaurant and were all laughing or BSing I just forget about my issues and order what I believe is gluten-free...As i mentioned i do call restaurants in advance to make sure which dishes are gluten-free, but I never address the cross contamination with servers ..even if i just order things plain. Also The few times I brought my own lunch or made a specific request, some of the other guys start poking fun at me and its irritating

ravenwoodglass Mentor
ravenwoodglass
Posted
Unfortunately I am forced to eat out a lot - i work in sales and am on the road quite a bit. When I'm on my own I do fine and usually hit Whole Foods or PF Changs or somethin like that. But traveling with colleagues is what gets me everytime. They all know i'm picky w/ food and have dairy issues , but I never told them bout the gluten thing. Also I always have so much fun with them and when im at the restaurant and were all laughing or BSing I just forget about my issues and order what I believe is gluten-free...As i mentioned i do call restaurants in advance to make sure which dishes are gluten-free, but I never address the cross contamination with servers ..even if i just order things plain. Also The few times I brought my own lunch or made a specific request, some of the other guys start poking fun at me and its irritating

Jason I understand that in your line of work that you have no choice but to eat out with your coworkers. One thing though, being celiac does not make you defective, it is not something to be ashamed of. I think you may find that once you open up about being celiac that should put an end to the poking fun and will actually make things easier. It will also possibly help some of them or their family members who may be suffering but not realize what is going on. You have the strength to be honest with them about why you are so 'picky' about what you eat and I do think that you will be much better off once they understand that you have a medical condition that requires you to be super careful about what you eat. If you were diabetic and constantly having folks trying to get you to eat cake I am sure they would understand once they knew. Celiac is no different in that it is a condition that you have no control over having. Please try to open up with them about it. I doubt you will find that they are unsympathic and your openness about it may actually give them a better opinion of your 'oddities' when it comes to food and to you as a person.

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