Please Help Me ! Undiagnosed. :(

[Manonfire]

Hi , I'm 19 male and have had problems with my health pretty much since birth.

I've had severe constipation since being on milk as a baby , I was given countless types of laxatives which worked ok but I've always been reluctant to take them since I don't like my body relying on medicine.

When I was 12 I started getting pain all in my lower body and after a few years of doctors saying it was in my head I was finally diagnosed with prostatitis and prostate enlargement both of which are very unusual to have at such a young age. The doctor put this down to my constant constipation and the colon pressing along the back of the prostate gland causing the problem.

I was put on treatment but still to this day mainly whilst I'm constipated my prostate causes me a lot of pain and discomfort.

In the past year I started feeling sick after eating , getting very tired , the constipation is worse and most alarming of all I've lost a massive amount of weight in the last few months. I was close to 10 stone and at my worst I was 7 13 about 2 months ago. Luckily through binge eating I've managed to reach 8 stone 2.

My doctors have found I'm lacking in B12 and I'm lacking in Folic acid. An endoscopy from a gastroenterologist found I had acid reflux and erosion of the stomach lining. Looking at all my symptoms I was sure I was celiac.

The gastroenterologist also did a CT scan which came back perfectly fine. He took blood and said that was fine too but I've no idea what I was tested for. He said before any of this he was going to do a colonoscopy although he's changed his mind now and says he's certain that I'm not celiac ( or that I don't have chrons which was something else I considered a possibility ).

I recently had an intolerance test which came back positive on cows milk , nuts and highest of all wheat.

All this together really leaves me thinking I'm celiac. I stopped wheat for almost two weeks and I have slight acne on my face ( always thought it was hormonal ) and it cleared up a lot !.

I then started wheat again since I'm having a very hard time gaining weight , ecspecially without wheat which was a major part of my diet.

When I started eating it again my skin broke out and I felt sicker than I normally do.

After avoiding wheat again for 2 days I feel much better.

I have a few questions if anyone could be kind enough to try their best to answer them I'd sincerely appreciate it.

Does it look likely from your point of view I could be celiac ?.

Has anyone suffered with acne with this disease ?.

How long would it take to start gaining weight again once following a gluten free diet ?.

What are some full fat foods that don't contain gluten ? ( or dairy or nuts since I'm apparently intolerant to these too ! lol ).

I asked my doctor last week to do allergy testing and they didn't think it was needed. Since proving them wrong with my prostate after the two years they were calling me a liar I think they're left with a bad taste and now don't belive anything I say !.

Thanks in advance for any replies.

Tay

[Skylark]

Hi, Tay

Yes, I think you have plenty of symptoms of celiac. It sounds like you have a fair amount of malabsorption.

Is there any way for you to get to another doctor? This one isn't doing you any good. Your GI should have done biopsies with the endoscopy. Did they get any biopsy results? A CT scan is not used for celiac diagnosis at all, so it's good yours was normal. You have the right to request the results of your blood tests too. If you post them here we can make sure you even got the right tests. Sometimes doctors see one of the celiac panel results come up but not all and they don't diagnose celiac.

(Sadly if you didn't get the right tests you'll have to keep eating wheat until you get tested again if you are interested in the results. You do not have to have a formal diagnosis to go gluten-free and feel better.)

It can take anywhere from a few months to a couple years for your intestines to heal from celiac. Some people start gaining weight pretty quickly; others take a year or so.

I have acne rosacea, but it doesn't seem linked to gluten.

Some rich foods that come to mind are seeds like sunflower or sesame seeds, eggs with the yolk, avocados, olives, red meat (too much is not so good for you), mayonnaise, and oils.

[Manonfire]

Thank you for the fast reply.

Yes , I had the endoscopy biopsy results back and they were clear although that's what got me wondering.. could it be possible a colonoscopy biopsy could show celiac or something similar when the endoscopy one didnt ?.

I've always thought a colonoscopy was a good idea anyway since I've had bowel trouble for almost 20 years now and I've never had one done , it just seems my doctors don't want it to happen.

I could try and get to a different doctor I suppose yes and it probably is a good idea.

I've always belived in the phrase " you are what you eat " but funnily enough never really paid attention to it.

After stopping wheat and feeling slightly better already and seeing my skin improve it's gotten me somewhat hopeful that I may have found the cause or at least partial cause of why I feel ill so often.

One more thing I was wondering is , is constipation common with Celiac disease ?.

I usually see it in a list of symptoms but when reading more personal cases it always seems the person is suffering from the complete opposite !.

Thank you for the list of foods , that will be helpful and I am going to request my blood results back from the gastroenterologist.

Tay

Hi, Tay

Yes, I think you have plenty of symptoms of celiac. It sounds like you have a fair amount of malabsorption.

Is there any way for you to get to another doctor? This one isn't doing you any good. Your GI should have done biopsies with the endoscopy. Did they get any biopsy results? A CT scan is not used for celiac diagnosis at all, so it's good yours was normal. You have the right to request the results of your blood tests too. If you post them here we can make sure you even got the right tests. Sometimes doctors see one of the celiac panel results come up but not all and they don't diagnose celiac.

(Sadly if you didn't get the right tests you'll have to keep eating wheat until you get tested again if you are interested in the results. You do not have to have a formal diagnosis to go gluten-free and feel better.)

It can take anywhere from a few months to a couple years for your intestines to heal from celiac. Some people start gaining weight pretty quickly; others take a year or so.

I have acne rosacea, but it doesn't seem linked to gluten.

Some rich foods that come to mind are seeds like sunflower or sesame seeds, eggs with the yolk, avocados, olives, red meat (too much is not so good for you), mayonnaise, and oils.

[kareng]

When they did the endoscopy, did they take samples of the small intestine? Ask to see the pathology report on those samples. Ask how many were taken. They need to take at least 6 samples because Celiac is not easy to see on the scope camera.

Celiac cannot be diagnosed with a colonoscopy. Might still be a good idea because you might have something else going on.

You need to find out what blood work they did. You can not just assume they took the Celiac panel or even read the results correctly or at all. You are going to have to stand up for yourself with the doctor or take someone with you that will.

Just went & looked at your Avatar pic. I'm thinking you may have more issues than Celiac.

[sreese68]

I noticed that I had a worse than normal acne break out when I did my gluten challenge (eating it) recently. It cleared up and was better after I got off gluten again even though it was a time that normally I'd break out (I'm female, so my acne is greatly effected by my hormones.) I get the deep cystic acne and have fought it since 15. I'm 42 now. I don't consider this one-time experience enough to say my acne is definitely linked to gluten, but it is interesting...

I asked my dermatologist if acne can be caused or effected by food intolerances. He said that for MOST people, food intolerance don't make a difference one way or the other. BUT there are those for whom it does make a difference. So I'd say that gluten could very well cause your acne. The only way to know for sure is to keep track of your symptoms and what you eat.

I keep a food and symptoms log, and it didn't occur to me to track my acne. I am now doing so. I don't think I've been off gluten long enough or tracked down all my food intolerances well enough to know if food is a factor for my skin.

As for your other symptoms, I'd be HIGHLY suspicious of celiac. Some GI doctors, like mine, think that you can't have constipation with celiac. It only takes a simple search of the forums here to see that that simply isn't true. Perhaps that's why they think you don't have it???

[sreese68]

One more thing I was wondering is , is constipation common with Celiac disease ?.

I usually see it in a list of symptoms but when reading more personal cases it always seems the person is suffering from the complete opposite !.

Tay

I didn't see this when I posted earlier. The only reason I went to the GI in the first place was pain in my lower right abdomen. It went on for 8 or 9 months. Turned out to be caused by chronic constipation. In my case, my intestines seem to slow down and cause back up and pressure there. Anytime I eat a food that doesn't agree with me, it gets worse. By the time I started my elimination diet, I had pain in my entire abdomen daily for a month. The elimination diet made a HUGE difference after a couple of weeks.

It was my neurologist who told me to go gluten-free and who diagnosed me.

[Manonfire]

Thanks for all the replies.

I'm going to ask for the details of my tests as mentioned. The reason I'm hesitant to be pushy with my doctors is with them being funny with me already if it turns out I'm not celiac they're going to be even more awkward in the future.

Regarding the acne , wheat has an effect on my skin for sure. I can tell after just a few hours. 2 days and it's obvious and other people even notice , it simply goes very flat. I'm tempted to start some antibiotic treatment for my skin then avoid wheat completely and see how it goes.

I'm happy to hear you think I could still have celiac diesase whilst having severe constipation as this seems to be the thing that keeps making me think I don't have it. I'll have to get all this checked out so at least now I have an aim unlike this morning !.

This forum has been a great help already !. Thank you everybody.

[Manonfire]

I didn't see this when I posted earlier. The only reason I went to the GI in the first place was pain in my lower right abdomen. It went on for 8 or 9 months. Turned out to be caused by chronic constipation. In my case, my intestines seem to slow down and cause back up and pressure there. Anytime I eat a food that doesn't agree with me, it gets worse. By the time I started my elimination diet, I had pain in my entire abdomen daily for a month. The elimination diet made a HUGE difference after a couple of weeks.

It was my neurologist who told me to go gluten-free and who diagnosed me.

I get pain in the exact same spot daily !. Lower right abdomen and I've always presumed it was constipation. I also get a tingling sensation there and across my stomach.

So starting the diet helped your constipation ?.

[sreese68]

I get pain in the exact same spot daily !. Lower right abdomen and I've always presumed it was constipation. I also get a tingling sensation there and across my stomach.

So starting the diet helped your constipation ?.

Yes. I also made sure to increase my fiber as well. Now before you think that the fiber is what got rid of the pain, hear me out! LOL! I eliminated soy, lactose, gluten, and some other things (FODMAP diet) and got better but still had pain in my side some days. I started to slowly increase the fiber in my diet by a gram or two a day. Pain went down again. I tested brown rice, which I suspected was a problem. WORST constipation I had ever had despite my higher levels of fiber. (My constipation shows up as pain and backing up. I am able to go, but not enough to keep up with what needs to happen.) Got that cleared up with a suppository and things were better. Tested gluten (am eating even more fiber at this point). Neuro symptoms abound and constipation shows up a few days later. Get better. Test tomatoes - stomach pain two days later.

Fun, huh?! My pain is worse with brown rice and tomatoes. Gluten effects my nerves primarily, and my GI symptoms are less severe with it. Constipation yes, stomach pain no. I have a theory that gluten messes up the nerves that control the intestines which leads to slow gut motility. (It's a type of neuropathy.) I do think that gluten initially caused my lower right abdominal pain because eating it every day would certainly slow things down enough to eventually cause pain. The other food intolerances just showed up more and worse after going gluten-free, which is a common thing to happen.

I will also note that right before I went gluten-free, I traveled to London with my husband. I ate WAY more muffins and bread than normal. (All those muffins offered at museum cafes!) I kept wondering if I had caught a low level stomach bug since my stomach hurt SO much! Now I know why.

[Manonfire]

Thanks.

Rice and potatoes is something I'm personally trying to eat more of to gain the extra carbs from that I'll be missing from foods with gluten. It's interesting though that rice seemed to cause you a problem , I might cut it out myself for a week or two and see how I feel.

Tomatoes is something I'm supposed to eat with my prostate gland being a problem so I can't really cut those out and it's unlikely we'd have the exct same problems anyway lol !.

I take it most celiac's eat rice and potatoes ?. High calorie foods with carbs seem to be a hard thing to find with this diet so the I wouldn't like to cut the few things out I can eat.

Can anyone recommend a way to eat avocado ?. I've never even tried it lol !.

[sreese68]

One last post, and then I need to get my kids off the Wii and doing something! I don't have the tingling in my abdomen. Just pain. Have you googled autonomic neuropathy? It's a type of neuropathy that can effect the digestive tract. I have peripheral neuropathy caused by gluten, and I wonder about the autonomic type. Anyway, it's something to think about.

I also forgot to mention that I no longer have the lower right abdominal pain. It only shows up again when I've eaten a food that doesn't agree with me, though that will also cause pain through the entire length of my large intestine. It did take weeks for my lower right pain to go away. Not sure how much of it taking awhile was not knowing that the brown rice flour in gluten-free foods was a problem vs my intestines just needing time.

[kareng]

Open Original Shared Link

Lists watermelon & grapefruit as high in Lycopene.

Avocado is good on a salad or sandwich. I like it chopped up with a bit of salt & lime juice and corn chips or on a corn tortilla.

Add olive oil to foods you are eating for some healthy fats. Nuts or Peanut butter if you can.

[sreese68]

Thanks.

Rice and potatoes is something I'm personally trying to eat more of to gain the extra carbs from that I'll be missing from foods with gluten. It's interesting though that rice seemed to cause you a problem , I might cut it out myself for a week or two and see how I feel.

Tomatoes is something I'm supposed to eat with my prostate gland being a problem so I can't really cut those out and it's unlikely we'd have the exct same problems anyway lol !.

I take it most celiac's eat rice and potatoes ?. High calorie foods with carbs seem to be a hard thing to find with this diet so the I wouldn't like to cut the few things out I can eat.

Can anyone recommend a way to eat avocado ?. I've never even tried it lol !.

OK, THIS is my last post! LOL! I can eat white rice just fine. Brown rice is a problem. Potatoes are fine for me. You'll find that everyone has different foods they can tolerate or not. You just have to experiment. Keep a log of ALL foods you eat and your symptoms. Be aware that you can react up to 3 days after you eat something. My typical reaction time is 2 days after I eat an offending food.

[cassP]

Thanks.

Rice and potatoes is something I'm personally trying to eat more of to gain the extra carbs from that I'll be missing from foods with gluten. It's interesting though that rice seemed to cause you a problem , I might cut it out myself for a week or two and see how I feel.

Tomatoes is something I'm supposed to eat with my prostate gland being a problem so I can't really cut those out and it's unlikely we'd have the exct same problems anyway lol !.

I take it most celiac's eat rice and potatoes ?. High calorie foods with carbs seem to be a hard thing to find with this diet so the I wouldn't like to cut the few things out I can eat.

Can anyone recommend a way to eat avocado ?. I've never even tried it lol !.

what about watermelon??? that is also really good for the prostate- comparable to tomatos i think- ALTHO tomato PASTE has the most lycopene. Wheat has a HUGE negative effect on the prostate- but also like you mentioned- the constipation. my brother had painful Prostatitis too- from constipation from medication... he had all kinds of tests to make sure his prostate was fine... he actually went to a REALLY ADVANCED specialized massage/physical therapist who could release trigger points in the back and ribs that connected to the prostate- there are also very few therapists who can palpate actually up that area- but it's hard to find those who can and will do that.

YES YES and YES- Constipation is SO COMMON with Celiac and nonCeliac Gluten intolerance- dont ever let a doctor make u feel stupid ever... they really dont know everything especially concerning gluten. also- you may have to just listen to your body, because blood and biopsy tests run about a 20% false negative.. on top of that- doctors may not take enough biopsies (thru an endoscopy).. or they may not run a COMPLETE blood panel..

it's possible it could cause your acne. the first time i went of wheat a decade ago (didnt know anything about gluten then)- i had severe acne on my forehead for 3 months- worst in my life, im assuming it was a detox of the wheat & gluten

as far as gaining weight- i always suggest all the starchy fillers like rice as long as you dont have intestinal issues with it. many of us have issues with ADDITIONAL starches... so you may have to do trial and error... i am fine with rice, but cant do corn or potatoes.. so anyways- if you can do white rice- that would be a great way for you to get the extra calories. but also make sure you're eating all your healthy foods too- fruits veggies, lean meats, healthy fats.. you need your nutrients to heal

good luck!!!

[Manonfire]

Thanks for all the help everyone.

I'm really glad I joined this forum now.

The acne whilst really bothersome is the least of my worries at the moment to be honest with having lost so much weight and feeling ill with no idea what's happening. I've always thought my constipation was the cause of everything , all that inside of me going nowhere I thought would have been sending bacteria into my blood and coming out on to my face through my sweat glands causing acne. My colon pressing against my prostate because it's so full and if I could just get it under control I'd feel a lot better I'm sure.

If gluten could be causing prostate problems , feeling ill , constipation , acid reflux , acne , any one of those things then it's at least worth a try with this diet.

I really do think in some way it has something to do with it , I barely had any sleep last night but I feel more awake than a normal day when I'm eating wheat lol !.

Thanks again guys.

I'll let you know how I'm getting on or if anything new happens.

[Manonfire]

Something I've been thinking about.

A while ago I thought the cause of my Acne may have been a candida overgrowth since I was on antibiotics for my prostate for almost three years straight !. I developed acne not long after finishing that course and I've actually just realised my symptoms I've mentioned here have really worsened since I took a course of lymecycline ( antibiotic for the skin prescribed by the doctor ).

I know a gluten free diet could only help my body if I have a candida overgrowth and I've today realised pretty much every problem I could have is linked in someway.

Candida overgrowth > acne , constipation , prostate problems , feeling sick , poor digestion , weight loss , acid reflux < celiac disease/intolerances

I know it seems I could be getting ahead of myself but I really want to keep this diet up and start taking some supplements to fight Candida overgrowth. I'm trying my best to get an appointment with my doctor in the morning to get his opinion on all of this although I already know they'll most likely just tell me there's nothnig wrong and I'm paranoid. If they decide to help , great. If they don't I'm not listening and I'm giving this a shot. I feel like I'm finally able to help myself somehow.

I know there are probiotic drinks around but most contain milk or some form of lactose and I'm trying my best ot avoid this also, can anyone reccomend some probiotics that I can take on a gluten free diet ?.

[Manonfire]

SO I've just woke up at 2am now feeling really really sick , shivering in my own sweat and like I'm going to have diarrhea.

I'm getting really depressed with this now , nothing I do seems to help and I know tommorrow these doctors are going to look at me like I'm an idiot even if I stand my ground.

Why can't they just find something wrong !.

[psawyer]

It may or may not be relevant, but prior to my diagnosis I experienced night sweats, and cold sweats during the day. It all stopped after I went on the gluten-free diet. My migraines went away too.

[Jenniferxgfx]

I've had bad acne since I was 8 years old and I'm in my 30s now. I've tried everything short of Accutane (too scared), and the only thing that made any improvement was giving up dairy, but its still bad. Recently I discovered my skin worsens the day after ive eaten a lot of gluten.

I have lots of other symptoms, but the acne is something that's really bothered me on a number of levels.

I'm waiting to see a gastro doc, but regardless of what happens, I'm done with gluten. It's bad for me in so many ways, no matter what docs say.

Since you know you don't have crohns (one of my concerns too), do you need to keep screwing around with the docs? Do you feel comfortable giving up the gluten just feeling it's best for you?

I feel for you :/