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Newly Diagnosed Celiac, Long Time Diagnosed Depression


sherylj

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sherylj Rookie

hi all!

I am totally new to posting boards and am newly diagnosed celiac. I suspected celiac for 10 years (my father was diagnosed) but my dr was not willing to do testing!!! I wish I had been more assertive!!! Finally after being hospitalized with severe stomach/intestinal pain he finally agreed to biopsy of small intestine.

My question: I have been diagnosed major/chronic depression for 10 years and bipolar type 2 for the last 2 years. I take a variety of meds. Does anyone have an opinion about easing off the medications?Ha,,that is of course if I can pick up on the gluten free diet!!!!!!!! So far I'm reading labels,,and eating meat, veg and fruit. oh, I want Taco Bell tonight,,are the taco's gluten-free?? Hopefully the shell is cornmeal.

I am so irritable and anxious now,,,is this adapting to new diet,,,?? I guess I will make lots of mistakes. I am hoping the sunshine begins to penetrate the cloud of depression as I cleanse the gluten from my system.

Replies and suggestions welcome! Sheryl


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Lisa Mentor

Hi Sheryl:

Welcome. You found the perfect place. You will learn more here than anywhere else.

I would not to tamper with you meds until you see improvement from a gluten free diet, and then, I would suggest discussing this with your doctor (or new one that understands Celiac!). Going off anti's can cause some pretty rough reactions.

You might not want to eat out for a while. Taco Bell has very little gluten free items and if I recall correctly, their shells are not gluten free (I need to check on that).

Gluten can hide everywhere...your shampoo, lotions, lipsticks, soy sauce...

You are smart to keep your initial diet simple. Meats, Seafood, Veggies, Rice, Potatoes. Oatmeal is not considered safe, as to cross contamination. Limit your seasonings to salt and pepper for a while until you inside heal a little. They you can gradually add new things to your diet. By then you will be a pro at reading labels.

Dairy is frequently difficult to digest in the beginning (lactose is absorbed on the tips of the villi - which get burned off from Celiac - Nancy taught me that).

Again welcome to our world and the rule here is that "there are no stupid duestions", always feel free to ask when in doubt or just share something.

ravenwoodglass Mentor
hi all!

I am totally new to posting boards and am newly diagnosed celiac. I suspected celiac for 10 years (my father was diagnosed) but my dr was not willing to do testing!!! I wish I had been more assertive!!! Finally after being hospitalized with severe stomach/intestinal pain he finally agreed to biopsy of small intestine.

My question: I have been diagnosed major/chronic depression for 10 years and bipolar type 2 for the last 2 years. I take a variety of meds. Does anyone have an opinion about easing off the medications?Ha,,that is of course if I can pick up on the gluten free diet!!!!!!!! So far I'm reading labels,,and eating meat, veg and fruit. oh, I want Taco Bell tonight,,are the taco's gluten-free?? Hopefully the shell is cornmeal.

I am so irritable and anxious now,,,is this adapting to new diet,,,?? I guess I will make lots of mistakes. I am hoping the sunshine begins to penetrate the cloud of depression as I cleanse the gluten from my system.

Replies and suggestions welcome! Sheryl

The most important thing you need to do about your meds is get ahold of your pharmacy and check and make sure they are gluten-free. Then make sure if you want to get off of them that you do it under your doctors direction.

I suffered from depression for over 30 years. I have been med free, literally all I have taken is asprin since I went gluten free.

The only time I get depressed now is if I get glutened. I hope you find the same hold true for you. It is like being a different, calm and pain free person.

celiacgirls Apprentice

I've been on the diet for about 10 months now. I was taking an a/d for about 18 months before that. I could tell in 2 days that I didn't need my a/d any more. I felt giddy, not in a good way. I tapered off pretty quickly with no bad side effects. I did get a little dizziness when I tried to do it too fast.

My daughter is also on an a/d. She has been tapering off but is only down to 1/2 the dose after 10 months. She was on a higher dose than me to begin with and I think she keeps getting into gluten and casein by mistake (or not). She is not as strict as I am with her diet. There is a definite difference in her mood when she has been glutened and it has happened often enough that we've been unable to pick a good time to reduce her dose again. She is a different kid since she has started the diet, though, even with the mistakes made.

For me, the only time I feel that way now is when I get glutened. I am very strict because I don't want that depression to come back. It only takes a tiny amount of cc and the bad mood lasts for more than 2 weeks. It has always been at a restaurant so I avoid them when I can.

So it's very possible you will be able to reduce or eliminate your meds but I agree that I wouldn't do it without seeing the benefit from the diet or new problems with your current medicine. And of course, consult with your doctor about tapering off.

sherylj Rookie

[

Dairy is frequently difficult to digest in the beginning (lactose is absorbed on the tips of the villi - which get burned off from Celiac - Nancy taught me that).

Again welcome to our world and the rule here is that "there are no stupid duestions", always feel free to ask when in doubt or just share something.

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      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
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      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
    • EssexMum
      Hi, I am after some advice re my step daughter and her Coeliac Disease. She is 9 years old and had a very limited diet before being diagnosed (very fussy and very lenient parents), since being diagnosed it has become hard to find places out that will cater for her, but we manage.  History: She had been having severe tummy pains on and off every few months so had a bunch of tests and eventually was diagnosed with celiac disease a number of months ago. We was told that she is at a very high level and should avoid gluten for the rest of her lift, we was told that the gluten she has been eating has damaged the 'fingers' inside her and they will not replenish. We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesnt react to the gluten straight away, it will be a build up and then the pains start. We was advised that by her not reacting straight away, it did not mean it wasnt harming her inside. We was given literature about buying a separate toaster and cutting board etc to avoid cross contamination and have been checking all food labels etc.  Problem: the issue is the novelty seems to have worn off with her Mum and we are now posed with a situation. They are going on holiday to Disneyland Paris for 3 nights and she phoned the hotel who said they cannot cater for gluten free. She phoned the GP and had a conversation and then told my partner that the GP had said it was fine for her to have gluten for the 3-4 days. He questioned it and she said no its fine, she hasnt had it for months so a few days wont hurt and she exposed to it anyway without knowing so it will be fine and shes not ruining her holiday etc.   My partner could see from the online notes that his ex wife had told the doctor that the child does not follow a strict gluten-free diet anyway - not true. At least not with us! My partner requested a call with the same doctor who told him that it is the mums discretion and that the child should be monitored for reactions - he explained that the issue is she doesnt react straight away. The GP said no its all mums discretion and she knows best. We are going to try to speak to the consultant at the hospital, but I just wanted to gauge some thoughts. It just seems bizarre to me that we can go from being told to avoid gluten for the rest of her life and how harmful it is to her body, to now it being ok for her to have it for a few days. Thanks in advance  
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