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Totally Depressed


Char83

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Char83 Newbie

Hi,

I'm 25 years old and have been suffering with stomach problems for the past 5 years. I've been to tons of GI docs, and gotten every test. I don't have celiac. All any doctor has told me is that I have IBS. I am constantly bloated, gassy, and took me off gluten and dairy. About a week after I started to feel much better, and was going to the bathroom almost every day. Then things got bad again. I was so fed up with eating gluten free and not feeling better. I started to think that maybe I don't have a gluten intolerance. So last night I ate some bread, and for the rest of the night, and still today, I feel bloated and gassy etc. I just don't know what to do. I just wish I could get a diagnosis. I am handle this gray area of should I or shouldn't I eat gluten...I just wish someone who tell me what to do. I'm not good and just taking things in and out of my diet and figure it out based on how I feel; cause every day i feel different. How do I know if what I'm feeling is from gluten or not? How long after and for how long what I feel bad from eating gluten. I just feel so depressed that eating bread last night made me feel bad. Does this mean I shouldn't be eating gluten. The idea of that makes me feel so sad and alone.

Someone Please Help.

Char


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rinne Apprentice

I am sorry that you are feeling so sad and alone. :(

I know that it is difficult to be ill and without a diagnosis, I spent a too long in that place myself.

You say that you don't have Celiac, can you tell me how you know that? What tests were done? Have you been on antibiotics for any extended period? I ask because they can mess up the good bacteria in our gut and that may lead to gluten intolerance.

The fact that you are bloated and feel bad today is a clear sign that gluten is difficult for you to digest. Bloating indicates difficulty in digestion, it may indicate other things too and I am not a doctor so don't take what I say as medical advice. :)

Whether you are or are not a Celiac it may be wise to follow a simple diet of unprocessed foods, meat, fish, eggs, vegies, fruit. This diet is less stressful on our digestion.

This is a great place to ask questions, there is lots of support here. You don't have to feel alone. :)

ravenwoodglass Mentor

Yes the bread you ate last night could be causing the deep depression that you are experiencing today. For some of us, myself included, this is a prominent feature of the 'being glutened' experience. Now that I have been gluten free for 6 years fortunately for me it now lifts quickly.

It is also quite possible to test negative and still be either celiac or gluten intolerant. My diagnosis was delayed by many years by that fact. That and I had no internet and access to sites like you have now had me living basically with no hope. As a last ditch effort I saw an allergist and through an elimination diet I was finally diagnosed.

A week is not really long enough gluten free to be able to heal up. For one thing this diet does have a lot to it and it takes most folks a month or two to really know how to eat gluten free safely. You have come to a great place to learn the most in the shortest amount of time though. Be sure to read a lot of posts.

Something that may help you quickly is to get some sublingual B12. Make sure it is gluten free and make sure it is sublingual.

Please do stay on the diet and give it a bit more time. We all struggle at first and your not alone.

Also you need to make sure that they have done a full celiac panel on you. You mention going to 'tons of GI's', did any of them do an endoscopy? Thats the test where they stick a tube down your throat and take biopsies of the small intestine. If so how long since the last time they did it? If you live in the US you can and should get copies of those actual test reports. Too many times there are changes in the early stages that doctors or pathologists may not realize are significant.

I hope you feel better soon.

celiacsoyfree Newbie

It would be a good idea to read a few books on Celiac's. There's more to it than just not eating gluten. 1 week or even 1 months gluten free may not exhibit any improvements, for some people it does. It took 2 1/2 months before I felt real improvements. It can take up to 1-2 years for the intestines to fully heal.

I've seen quite a few doctors and specialists, ironically only one GI doctor. The GI doctor was the first to suggest celiac testing. I then did some very basic research. It made sense, the sypmtoms fit! In my excitement, I started to go gluten free before taking my test. Then went back on gluten as soon as I read I must be consuming it. Anyhow, my GI md only ordered 1 kind of celiac blood test which was negative. He told me I had IBS, said there was no cure or pill, and that I could eat whatever I wanted. Then, prescribed me a pill and said to see a psychiatrist.

At that point, I had been gluten free for a couple months, but I wasn't 100% gluten free from the beginning, because it's a process. I decided to stick with the gluten free diet, do more research and discipline myself on eating well, not just gluten free. I decided my doctor was a jackass, and terribly ignorant of how the body works. The doctor could have ordered other celiac tests, vitamin deficiency tests, he could have looked at the medical history I pain painstakingly typed up.

Point being don't give up, do your homework, stay positive. There's alot of support here! :)

Char83 Newbie
I am sorry that you are feeling so sad and alone. :(

I know that it is difficult to be ill and without a diagnosis, I spent a too long in that place myself.

You say that you don't have Celiac, can you tell me how you know that? What tests were done? Have you been on antibiotics for any extended period? I ask because they can mess up the good bacteria in our gut and that may lead to gluten intolerance.

The fact that you are bloated and feel bad today is a clear sign that gluten is difficult for you to digest. Bloating indicates difficulty in digestion, it may indicate other things too and I am not a doctor so don't take what I say as medical advice. :)

Whether you are or are not a Celiac it may be wise to follow a simple diet of unprocessed foods, meat, fish, eggs, vegies, fruit. This diet is less stressful on our digestion.

This is a great place to ask questions, there is lots of support here. You don't have to feel alone. :)

Thanks so much for replying.

I "know" i don't have celiac because my dr. did an endoscopy and colonscopy and took biopsies and said that i "didn't have celiac". i'm feeling so helpless to fix what ever is wrong.

Food is such a big part of my life; and I feel like I won't be able to participate in so many things because of it.

rinne Apprentice
Thanks so much for replying.

I "know" i don't have celiac because my dr. did an endoscopy and colonscopy and took biopsies and said that i "didn't have celiac". i'm feeling so helpless to fix what ever is wrong.

Food is such a big part of my life; and I feel like I won't be able to participate in so many things because of it.

I asked about how you know you don't have celiac because the endoscopy is not always unreliable. I know there are people on this board who were told that they didn't have celiac and it was only later when the damage was worse were they diagnosed with celiac.

Not that I want you to have celiac. :) It's also quite possible that you have gluten intolerance which may heal and you may be able to eat gluten again. That is why I asked about the antibiotics.

What do you eat each day?

Was your digestion fine until five years ago?

What was your diet like growing up?

What was happening five years ago when you got sick?

If I am too nosy just tell me. :)

I sympathize with the food thing, I've been a cook for many years, professionally, and I can't go back to any kitchen with baking in it. :( And I did lose food for a period of time, still haven't really got back into entertaining as I once did but I am getting excited about cooking

again and this corresponds with my feeling better.

As others have said you have to give a gluten free diet some time and it is important to be vigilant in staying gluten free.

The first year I was gluten free I had a number of accidents, it got easier after that. :)

Your health is the important thing, I am 54 and I knew for years that wheat wasn't good for me and I avoided it but I didn't understand about gluten. When I think now of the number of times I ate bad gluten just to go along, just because others got uncomfortable if I didn't eat it I could seriously kick myself. :lol:

Char83 Newbie
It would be a good idea to read a few books on Celiac's. There's more to it than just not eating gluten. 1 week or even 1 months gluten free may not exhibit any improvements, for some people it does. It took 2 1/2 months before I felt real improvements. It can take up to 1-2 years for the intestines to fully heal.

I've seen quite a few doctors and specialists, ironically only one GI doctor. The GI doctor was the first to suggest celiac testing. I then did some very basic research. It made sense, the sypmtoms fit! In my excitement, I started to go gluten free before taking my test. Then went back on gluten as soon as I read I must be consuming it. Anyhow, my GI md only ordered 1 kind of celiac blood test which was negative. He told me I had IBS, said there was no cure or pill, and that I could eat whatever I wanted. Then, prescribed me a pill and said to see a psychiatrist.

At that point, I had been gluten free for a couple months, but I wasn't 100% gluten free from the beginning, because it's a process. I decided to stick with the gluten free diet, do more research and discipline myself on eating well, not just gluten free. I decided my doctor was a jackass, and terribly ignorant of how the body works. The doctor could have ordered other celiac tests, vitamin deficiency tests, he could have looked at the medical history I pain painstakingly typed up.

Point being don't give up, do your homework, stay positive. There's alot of support here! :)

The elimination diet that my acupuncturist put me on, was the 1st clue to I might have a gluten problem. However I did eliminate Gluten and Dairy at the same time- so I don't which is necessarily the culprit. I find the process of determining what I can and can't eat, using the elimination diet very stressful. I feel like i can't trust myself. Like I feel like my body has been so messed up for a while that i can't trust what it is telling me. like i won't really trust that i should or shouldn't eat any particular food.


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pele Rookie
The elimination diet that my acupuncturist put me on, was the 1st clue to I might have a gluten problem. However I did eliminate Gluten and Dairy at the same time- so I don't which is necessarily the culprit. I find the process of determining what I can and can't eat, using the elimination diet very stressful. I feel like i can't trust myself. Like I feel like my body has been so messed up for a while that i can't trust what it is telling me. like i won't really trust that i should or shouldn't eat any particular food.

Hi there,

I'm going to be repititious and say that celiac tests are UNRELIABLE. Any doctor who says you don't have it based on a test does not know what he/she is talking about. Some people have had several endoscopies/biopsies done before a biopsy sample was taken from a damaged spot and turned up positive. Some pathologists call minor damage "negative". Blood tests are even more unreliable. Negative tests do not rule out celiac.

As far as what to eat: try whole, natural, unprocessed naturally gluten free and dairy free foods like meat, fish, chicken, eggs, vegetables, fruit, nuts, beans. If you are going to eat grain, make it whole organic nonGMO grain like brown rice, quinoa or corn tortillas. Once you simplify your diet in this way it will be much easier to tell what bothers you, as well as giving your body a healthy diet to promote healing.

Char83 Newbie

I asked about how you know you don't have celiac because the endoscopy is not always unreliable. I know there are people on this board who were told that they didn't have celiac and it was only later when the damage was worse were they diagnosed with celiac.

Not that I want you to have celiac. :) It's also quite possible that you have gluten intolerance which may heal and you may be able to eat gluten again. That is why I asked about the antibiotics.

What do you eat each day?

Was your digestion fine until five years ago?

What was your diet like growing up?

What was happening five years ago when you got sick?

If I am too nosy just tell me. :)

I sympathize with the food thing, I've been a cook for many years, professionally, and I can't go back to any kitchen with baking in it. :( And I did lose food for a period of time, still haven't really got back into entertaining as I once did but I am getting excited about cooking

again and this corresponds with my feeling better.

As others have said you have to give a gluten free diet some time and it is important to be vigilant in staying gluten free.

The first year I was gluten free I had a number of accidents, it got easier after that. :)

Your health is the important thing, I am 54 and I knew for years that wheat wasn't good for me and I avoided it but I didn't understand about gluten. When I think now of the number of times I ate bad gluten just to go along, just because others got uncomfortable if I didn't eat it I could seriously kick myself. :lol:

[/quo

It's hard for me to remember what my digestion and eating was like when I was younger. However I have always been the kind of person who felt their stress in their stomach. As a child I remember being very gassy and having diarrhea when I was nervous etc. When I was in 10th grade I got Giardia and Entamoeba histolytica. Every since then I went through periods of intense constipation or diarrhea (hence the IBS diagnosis)

My diet growing up was always healthy and "whole". My parents are both very healthy and both parents are great cooks. We always ate home cooked meals; never much take out or junk. And we were never an overly gluten house hold either, as someone was always on a diet.

I say that things have been worse for the past 5 years, mainly as a ball park thing. The worst of it has been the past 2-3 years. And in that time I started law school. (i am in my last semester now) so there was certainly a lot of stress and anxiety.

In the past (college and post-college) i suffered with depression and anxiety. I was taking the anti-depression/anxiety med Lexapro for about 5-6 years, though I went off of it this summer.

I also went off of all fake sugar and sweetener and cut out all soda etc this fall.

Recently I've been eating: Total Greek Yogurt with fruit for breakfast (my herablist said yogurt is fine even tho milk and cheese aren't) Lunch is hard for me cause i'm at school, but it is usually some kind of salad with protein, or gluten free soup, or tuna fish with gluten-free crackers. snacks are fruit, tortilla chips with hummus, nuts, or Larabars. Dinner is something like fish or meat, with steamed veggies and a sweet potato or rice etc. I generally eat a fair amount of soy- soymilk in my coffee, or soy cheese...

Before the gluten free diet I would usually have oatmeal or PB/J on an english muffin for breakfast, a sandwich or salad for lunch (with cheese), and dinner would be the same as it is now (but maybe gluten grains, like cous cous)

Is there a really simple diet I should try in addition to gluten-free, in order to see where the problem is? Do you have any suggests about exaclty what I should eat? (too many vague options stresses me out)

I'm sorry this is so long. Feel free not to keep answering. Also feel free to ask any questions, I'm happy to tell you everything about myself; I figure the more people know about me the more they can help.

thank you thank you thank you

Char83 Newbie
Hi there,

I'm going to be repititious and say that celiac tests are UNRELIABLE. Any doctor who says you don't have it based on a test does not know what he/she is talking about. Some people have had several endoscopies/biopsies done before a biopsy sample was taken from a damaged spot and turned up positive. Some pathologists call minor damage "negative". Blood tests are even more unreliable. Negative tests do not rule out celiac.

As far as what to eat: try whole, natural, unprocessed naturally gluten free and dairy free foods like meat, fish, chicken, eggs, vegetables, fruit, nuts, beans. If you are going to eat grain, make it whole organic nonGMO grain like brown rice, quinoa or corn tortillas. Once you simplify your diet in this way it will be much easier to tell what bothers you, as well as giving your body a healthy diet to promote healing.

Hi! Thanks for the reply. In your opinion are there any tests for gluten sensitivity/ celiac that ARE reliable? if yes- what are they? If not, then how do I know? As i've said in some of the ealier posts in this thread; having to diagnosis this all myself, based on an elimination diet, really really stresses me out.

Can you be more specific about the foods you think I should eat over the next week or so, to try and get to a baseline? (also, how do you feel about yams? are they ok to eat?)

caek-is-a-lie Explorer

You should also make sure that you're actually eating gluten-free. I thought I went gluten-free last August but discovered in November that I had been eating gluten all along in a seasoning I was using on my chicken every day. Once I realized I wasn't being careful enough, I studied all the charts and guides carefully and finally managed to get it right. After that I made a dramatic improvement.

I wish you well in figuring out how to feel better. I've certainly been there!

pele Rookie
Hi! Thanks for the reply. In your opinion are there any tests for gluten sensitivity/ celiac that ARE reliable? if yes- what are they? If not, then how do I know? As i've said in some of the ealier posts in this thread; having to diagnosis this all myself, based on an elimination diet, really really stresses me out.

Can you be more specific about the foods you think I should eat over the next week or so, to try and get to a baseline? (also, how do you feel about yams? are they ok to eat?)

I have heard there is a new test for gluten intolerance that measures a certain type of gliadin antibody in the saliva--can't remember the name, begins with a D. Demediated?? I have no first hand experience with it but it is supposed to be very accurate. You will likely need to go to a functional med doc or NP for this type of test.

In my last post, I mentioned a what to eat for a simple healthy diet. Now I'll mention what NOT to eat: Soy, sugar, corn syrup, any type of refined carbohydrate or refined grain product, any processed food. This means no baked goods, no sauces or dressings, no margerine, no jam, no energy bars, no power drinks, no nothing that comes in a plastic package and has more than one or two ingredients on the label. Just eat whole, natural food, no food substitutes or chemicalized foodlike substances. Get yourself on a simple diet, that is, avoid all foods with many ingredients, that way you will know what you are eating. This may sound difficult in the short run, but it is worth it for you to get to the bottom of this now, before you develop more health problems. You are lucky to be making these discoveries at a young age. Many of us continued to eat gluten for decades because we didn't know about it and no one told us!

Yams are a vegetable. Go for it.

curlyfries Contributor
In my last post, I mentioned a what to eat for a simple healthy diet. Now I'll mention what NOT to eat: Soy, sugar, corn syrup, any type of refined carbohydrate or refined grain product, any processed food. This means no baked goods, no sauces or dressings, no margerine, no jam, no energy bars, no power drinks, no nothing that comes in a plastic package and has more than one or two ingredients on the label. Just eat whole, natural food, no food substitutes or chemicalized foodlike substances. Get yourself on a simple diet, that is, avoid all foods with many ingredients, that way you will know what you are eating. This may sound difficult in the short run, but it is worth it for you to get to the bottom of this now, before you develop more health problems. You are lucky to be making these discoveries at a young age. Many of us continued to eat gluten for decades because we didn't know about it and no one told us!

Pele....I know you stated in your earlier post that this simple foods diet will help find what other food intolerances a person might have. I just wanted to make it clear to anyone new to gluten-free that going gluten-free does not mean eliminating all these things. But if you have issues that going gluten-free does not resolve, then eating simple is a good idea. It is the best way to get yourself feeling better. This is also where I am in my health care......actually, more restrictive than that. I would also recommend keeping a food and symptom diary.

mslee Apprentice

Hi There

I'm sorry your down, been a little blue myself lately.

Please keep in mind the test are commonly wrong. Do you guys know how accurate the genetic tests are?

Open Original Shared Link can be ordered through your doctor, and Open Original Shared Link can be ordered online.

I just wanted to say if you can give this more time, give it a chance. When I removed gluten all kinds of other allergies & intolerances popped up, soy was huge...I think it's just as painful as gluten for me. Also when a person is celiac their digestive systems cannot produce the enzymes needed to digest dairy...so it could be either or (gluten or dairy) or both for you.

Sadly the only way to know is to be patient & stick with it. I'm in month 7, month 4 I was going nuts because I reacted to everything. I'm getting it figured out & starting to feel better but I know I've still need some time to heal.

good luck!

hang in there!

rinne Apprentice

It's hard for me to remember what my digestion and eating was like when I was younger. However I have always been the kind of person who felt their stress in their stomach. As a child I remember being very gassy and having diarrhea when I was nervous etc. When I was in 10th grade I got Giardia and Entamoeba histolytica. Every since then I went through periods of intense constipation or diarrhea (hence the IBS diagnosis.)

I have heard IBD described as I Be Stupid, as in the doctor is stupid. :( How can there be something that is just Irritable Bowel Syndrome, does the bowel just get irritated for no reason? No, there is a reason and in your case what jumps out is that your gut was an area of vulnerability prior to the Giardia and Entamoeba histolytica and hasn't been able to recover since then.

I am thinking the antibiotics they gave you damaged the good bacteria, this has compromised your body's ability to digest food properly.

My diet growing up was always healthy and "whole". My parents are both very healthy and both parents are great cooks. We always ate home cooked meals; never much take out or junk. And we were never an overly gluten house hold either, as someone was always on a diet.

That is wonderful that your parents provided you with a healthy diet. Having a foundation of good healthy food is a wonderful advantage to have when so many now grow up eating highly processed foods.

I say that things have been worse for the past 5 years, mainly as a ball park thing. The worst of it has been the past 2-3 years. And in that time I started law school. (i am in my last semester now) so there was certainly a lot of stress and anxiety.

Does this mean you can look forward to some stress free time? It would be wonderful if you could take the time to just take care of yourself. :)

In the past (college and post-college) i suffered with depression and anxiety. I was taking the anti-depression/anxiety med Lexapro for about 5-6 years, though I went off of it this summer.

Interesting, my thinking is that anxiety is our bodies first way of communicating to us that there is a problem. I think that on a metabolic level there is no damage but damage is being done and thus the anxiety. Unfortunately, we treat the anxiety and the problem grows until there is damage. :( This is the point where it is on an immunologic level and the tests conventional medicine uses show the damage.

For celiac they use the Marsh scale, the tricky thing about the Marsh scale is that there are four stages to the destruction of the villi and they see the damage at the third stage, by the fourth stage we may never heal. :(

I also went off of all fake sugar and sweetener and cut out all soda etc this fall.

Recently I've been eating: Total Greek Yogurt with fruit for breakfast (my herablist said yogurt is fine even tho milk and cheese aren't) Lunch is hard for me cause i'm at school, but it is usually some kind of salad with protein, or gluten free soup, or tuna fish with gluten-free crackers. snacks are fruit, tortilla chips with hummus, nuts, or Larabars. Dinner is something like fish or meat, with steamed veggies and a sweet potato or rice etc. I generally eat a fair amount of soy- soymilk in my coffee, or soy cheese...

I found for me that with my gut as damaged as it was I just couldn't tolerate gluten free crackers and such, I would suggest you try giving up the processed gluten free stuff. I know when I first start posting here people would talk about Lara Bars and how wonderful they were and when I finally found them I was so excited, I wasn't happy to realize they hurt me. I think Pele made lots of great suggestions.

Soy, if you can avoid it for a time I would. :( Sounds like you like it.

Before the gluten free diet I would usually have oatmeal or PB/J on an english muffin for breakfast, a sandwich or salad for lunch (with cheese), and dinner would be the same as it is now (but maybe gluten grains, like cous cous)

Is there a really simple diet I should try in addition to gluten-free, in order to see where the problem is? Do you have any suggests about exaclty what I should eat? (too many vague options stresses me out)

The diet I am following now and have had the most success with is the SCD, I followed a gluten and dairy free diet for over two years before I was willing to admit that all grains bothered me. I like the science behind the SCD, it makes sense to me and it is a pretty precise diet. I'm no expert though, I have only been following it for a couple of months and am having to admit that although the diet allows cheese, my body doesn't. :( I have hope though, I read today that someone was able to resume eating cheese after four years. :)

I will say though that since starting it I have a steady sense of moving forward, inch by inch, before I would have a decent day followed by a horrible one and even though I kept a journal I couldn't make sense of it.

I am making the SCD goat yogurt and I am able to tolerate a little of that, the advantage to the yogurt is that it is high in the probiotics our bodies need because it is cultured for 24 hours.

I'm sorry this is so long. Feel free not to keep answering. Also feel free to ask any questions, I'm happy to tell you everything about myself; I figure the more people know about me the more they can help.

thank you thank you thank you

Don't worry about being long, I am happy to keep answering. :) And you are welcome.

rinne Apprentice

I think the reality is that once we are ill there are no simple solutions, illness requires that we pay attention. I know it is difficult but the reality is it may not be the foods themselves that are the problem, it may be that your digestion is challenged to work at all and so anything that is difficult for you to digest will cause distress.

This is why a journal can be so helpful. Eat simple foods, carry lunches, avoid all processed foods, drink ginger and peppermint teas, stay away from coffee, avoid stress......be patient and trust that your body will heal but it needs time and the proper conditions to do so.

I know you have said that the elimination diet stresses you out but it doesn't have to, you don't have to do some complicated add this food in after this many days etc., just eat simply. :)

Take epsom salt baths - great for detox, castor oil packs - good for pain, try to be patient. :)

pookie91260 Rookie

Hi,

I am older (48) but was just diagnosed. I have had belly issues since I was a little girl. I have always been lactose intolerlant, which by the way can be brought on by celiac. I am curious as to how they diagnosed you. Did they do a biopsy? Keep in mind there is gluten in so many thiings that are not food related. Envelopes, make up, even toothpaste. have you read any books? the gluten free bible is an excellent source. so is the gluten free diet by shelly case. You are not alone, there are many of us out here, and the numbers are growing. I understand your frustration and depression. I have been the same way since forever. Don't give up! Once you get things figured out you will start to feel better. I have made several mistakes over the past two months but as each day goes by, i feel stronger. good lcuk

  • 2 weeks later...
sweetkeet Newbie

I don't want to steal the thunder here, but I have a lot of the same problems and just wanted to see if anyone could help me out. Both of my sisters have Celiac and I was recently diagnosed. I have had crazy symptoms for the past 2 years and felt I might have it too, but wasn't sure. I had an endoscopy, colonoscopy, and a celiac panel done and they were all VERY positive.

I was really gung ho at first and trying very hard to be gluten free. If anything, my GI symptoms got worse. I would go for about 5 days at a time without having a bowel movement or an urge to have a bowel movement. Then I would resort to a laxative by day 5 because I was so bloated and uncomfortable. I was so constipated that I wouldn't even be hungry. The fact that I can't get regular or even have a BM every couple of days has left me extremely distraught. I have sunk into boughts of serious depression where I don't even want to go out, just sit and cry.

Also, the laxatives even mess me up more and make it harder for me to get back on track. In addition, when my Gluten Free diet doesn't show any improvements, I get really angry and just get frustrated. And not to mention, since I have gone gluten-free, I get these intense cravings for things like chocolate and french fries on random days (not even close to menstruation), and I will go home and eat my house clean and then hate myself for doing it later.

I am ALWAYS exhausted and I am on a good dose of vitamins and I get at least 8 hours of sleep a night, so that also bothers me. I have lost all interest in EVERYTHING. I used to have dreams, goals, and aspirations, but now all I think about is food. It rules my life and that really makes me angry.

Also, almost everyone I have talked to with Celiac has diarrhea, but I have severe constipation. Why is that? I would so much rather have diarrhea than constipation. Not to mention the gas I have. It could kill someone who is just an innocent bystander. I feel horrible for my fiance, but I can't control it and it smells atrocious. What on earth can I do to fix this?? I am at a loss, completely depressed, exhausted, and ready to quit everything.

Please help.

maile Newbie

hey sweetkeet! Welcome to the forum and I'm sorry you are feeling so awful!

Constipation is not that unusual for people with celiac/gluten intolerance, especially adults. as for what to do (and I agree, get off the laxatives if you can!) a couple of suggestions are take lots magnesium citrate or tons of Vitamin C, both of these will eventually cause D. Sorry about the lack of doses, I think it's individual tolerance.

the magnesium will also help with chocolate cravings (as in to make them vanish or at least manageable)

as for the depressed and frustrated if you are celiac then you probably have some absorption issues and the best advice I've seen here (and have taken myself and it's made a world of difference) is sub-lingual B12 and Vitamin D3....both of these will help with the "pmsey" feeling you are describing.

for gas there is 1 1/2 tsp of baking soda in water, that may help you be more comfortable

you can also search for posts by yolo who has a good handle on what herbs can be used to help the situation.

good luck and keep us posted on how you are doing :)

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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      results from 13 day gluten challenge - does this mean I can't have celiac?

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    • knitty kitty
      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.  
    • knitty kitty
      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
    • cristiana
      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep.  One of my relatives is an insomniac and I am sure that is part of the problem.  Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read, do a sudoku or some other small task, and then go back to bed when she felt sleepy again.  I can't think it did her any harm - she lived  well into her nineties. Last week I decided to try a Floradix Magnesium supplement which seems to be helping me to sleep better.  It is a liquid magnesium supplement, so easy to take.  It is gluten free (unlike the Floradix iron supplement).  Might be worth a try.        
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