New To The Forum. Please Read My Story. Have Questions And In Need Of Advice. Thank You..

[jkrc717]

Hi everyone. 38 y/o male here.  New to the forum. Just found out two weeks ago that I have celiac disease. Confirmed through a biopsy. I have a few question so I'm hoping anyone out there would be so kind to help me out and give some advice. 

 

For about 3 years I have been having some type of chronic illness. It usually lasts about 1-3 months at a time. My symptoms are major fatigue, light headed, dizzy, blurred vision, severe weakness and severe anxiety. Other symptoms would be warm or hot feet that sweat and even spasm at times. The best example I suppose I could give is a mix of diabetes and mono. 

 

This time around, my symptoms were worse than ever. It's been almost 5 months. 

 

I've been going to the doctor for the past 3 years and my blood work, xrays, cat scans always check out fine. 

 

I've been thin my whole life, but then I developed a large stomach while still being thin. It was kind of weird and just didn't seem normal. 

 

Doctors tell me I'm fine and it's my age catching up to me. 

 

I admit, my diet was very bad. I lived off very high carbs. All my life I've been able to eat whatever I wanted and still be very thin. 

 

So I really started being active and trying to figure this out on my own. A problem I found is that I have hyperglycemia which runs in the family. Doctors usually only test fasting blood sugar. Which is always normal. However, when I eat large amounts of carbs and test an hour and two hours later, my blood sugar is a little high. Between 140-170. That would mean I am pre-diabetic. 

 

My doctor ignored it. Saying if it goes back down after a few hours your fine. My A1c was 5.3 which is good. 

 

I ignored my doctor and took this very seriously. I changed my diet to basically no carbs. I started losing weight very quickly. That's what happens when you quit carbs. This wasn't good as I was too thin to begin with, but I really didn't know what to do as the disease scared me. 

 

I then developed a new symptom. Vomiting. Which was a struggle. I haven't actually thrown up in about 20 years. Throwing up is difficult for me for some reason. It was mostly just severe gagging and if anything came out it was mainly liquid. Water or whatever I was drinking. 

 

My doc referred me to a gerontologist(stomach doc, GI doc) Very difficult doctor. Bad communication. Not a bad doctor, but a real bleep-bleep. Had to stick with him because every other GI doc that my insurance takes was booked for months. .  

 

He had some blood drawn and scheduled a CT scan and Endoscopy. I called for my blood test results and was told everything was normal. He diagnosed me with gastritis after he performed the scope. Gave me omeprazole for the inflammation which helped. I still take it or else my stomach would feel like it's on fire. 

 

Now here is were things get complicated. I decided I wanted copies of any and all test results that were performed. What I found that the doctors missed was that my blood platelets were lower than min average. Normal is 150,000 to 500,000 and I was at 140,000. So I went to my primary doc and asked if this is something to worry about. She referred me to a hematologist. Tons of blood work. My blood platelets were fluctuating between 120 - 150. To make a long story short, I have a bone marrow biopsy done to test for leukemia. What a nightmare, but everything checked out fine(thank God). 

 

However, now I'm back to square one. 

 

In 4 months I lost 25lbs. Now I'm trying hard to get the weight back up. Still low on the carbs, but increasing them. It's hard for me to get the calories I need without going heavy on carbs.

 

Anyway, I'm still not getting any better. To make matters worse, I have a new symptom. I have evening and night fevers. Which makes me feel totally upside down. 

 

I follow up with my GI doc to get more stomach meds and he looks at my records and sees all these tests I've done. Such as the bone marrow biopsy. Then he looks and just then realizes my blood platelets were low. Like I said, very difficult doc. 

 

He turns around and says to me that there is strong evidence that I have celiac disease. Then scheduled a biopsy to confirm it. I didn't believe it, but was desperate.

 

Turns out the biopsy confirmed it. I was and still am in a little shock. I didn't lose weight because of celiac. I lost weight because I cut carbs. Plus, I assumed my low carb diet kept me away from gluten. 

 

It's been a few weeks now and I've been on a strict gluten free diet. At least I'm trying. I'm still learning what has gluten and what doesn't. Now, low carb and gluten free. Making it even that much more difficult to gain the weight back. I am struggling. 

 

So here are some questions..

 

Is this it? Did I have this disease for years and not know it? Is this the cause of all my problems? I'm doubting this. It's kind of hard to believe. 

 

Does celiac disease cause feet problems possibly feet neuropathy? 

 

Did this disease cause my stomach to my abnormally big for a thin person?

 

Is this why I'm having fevers?

 

Is this why I have all my other symptoms such as fatigue, weakness, dizziness, blurred vision, etc? 

 

Does this disease really cause low blood platelets? 

 

How long before I start feeling normal again?

 

Thank you everyone for reading. I hope to get some answers and some advice. 

 

I truly do appreciate it. 

 

God Bless

[LauraTX]

Welcome to the forum!

 

It is likely that all of the symptoms you are asking about could be from the untreated Celiac disease.  Be very strict with your gluten-free diet now, and it will take some time, probably at least 2-3 months, before you see improvement.  Full improvement can take a very long time, and it seems to be longer for people who went undiagnosed for a very long time or had very bad intestinal damage.  For example, my peripheral neuropathy went away around 6 months gluten free, and I didn't even know it was from Celiac.  I had gone through a lot of testing over it for the doctors to just shrug.  There are over 300 symptoms of Celiac disease, and they go way beyond GI tract issues.  The bloated belly may be one of the first things that you see improvement with once healing sets in.

 

Check out the newbie thread here: https://www.celiac.com/forums/topic/91878-newbie-info-101/  and another good source of info is the University of Chicago Celiac Disease Center (Open Original Shared Link) where they have some good current info and FAQ's.  The search function on here is very good, just make sure to check the date of the post since the forum has been around for a long time, so product ingredients and such can change over the years.  And feel free to ask any questions you may have.  Welcome to the Silly Yak Club!  I, too, was a carb addict before I was diagnosed... pretty much all I ate was gluten!  So I know firsthand how the learning curve can be... just start with the simple whole food stuff like meat/veggies and then slowly add on from there.  You also may want to avoid dairy and oats for the first three months... some people with Celiac can never handle either of those, but most are able to add them back into their diet.  If you want to add some carbs back in, you can start with whole grains like brown rice, quinoa, and something like sweet potatoes that have some extra nutrition.

 

I am sure more will chime in in the morning, I am off to bed, glad you have made it here to the forum, it is a very helpful place

[jkrc717]

Welcome to the forum!

 

It is likely that all of the symptoms you are asking about could be from the untreated Celiac disease.  Be very strict with your gluten-free diet now, and it will take some time, probably at least 2-3 months, before you see improvement.  Full improvement can take a very long time, and it seems to be longer for people who went undiagnosed for a very long time or had very bad intestinal damage.  For example, my peripheral neuropathy went away around 6 months gluten free, and I didn't even know it was from Celiac.  I had gone through a lot of testing over it for the doctors to just shrug.  There are over 300 symptoms of Celiac disease, and they go way beyond GI tract issues.  The bloated belly may be one of the first things that you see improvement with once healing sets in.

 

Check out the newbie thread here: https://www.celiac.com/forums/topic/91878-newbie-info-101/  and another good source of info is the University of Chicago Celiac Disease Center (Open Original Shared Link) where they have some good current info and FAQ's.  The search function on here is very good, just make sure to check the date of the post since the forum has been around for a long time, so product ingredients and such can change over the years.  And feel free to ask any questions you may have.  Welcome to the Silly Yak Club!  I, too, was a carb addict before I was diagnosed... pretty much all I ate was gluten!  So I know firsthand how the learning curve can be... just start with the simple whole food stuff like meat/veggies and then slowly add on from there.  You also may want to avoid dairy and oats for the first three months... some people with Celiac can never handle either of those, but most are able to add them back into their diet.  If you want to add some carbs back in, you can start with whole grains like brown rice, quinoa, and something like sweet potatoes that have some extra nutrition.

 

I am sure more will chime in in the morning, I am off to bed, glad you have made it here to the forum, it is a very helpful place

Thank you very much for the reply and info. I truly appreciate it.

[ravenwoodglass]

Welcome to the board. Be sure to read the '101' thread at the top of the coping page. It will have lots of good info for you. 

It could well be that your blood sugar will stabilize gluten free. Any illness can cause our blood sugar to get wonky and there are folks that have seen pre-diabetes resolve. The fact that your A1c is only 5.3 is good and hopefully you will be one of that group. You might want to try adding in more low glycemic index carbs once you are feeling better and test your sugar levels regularly to see how they are impacting you. 

 

Is this it? Did I have this disease for years and not know it? Is this the cause of all my problems? I'm doubting this. It's kind of hard to believe.      

      Hard to say how long you have had celiac. But yes it is possible you had it for years and it is causing most of your issues. 

 

Does celiac disease cause feet problems possibly feet neuropathy? 

       It can. That and more. Some find sublingual B12 supplements to help speed relief from neuro isses.

 

Did this disease cause my stomach to my abnormally big for a thin person?

       Yes it can do that to us due to vitamin deficits

 

Is this why I'm having fevers?

        Possibly. 

 

Is this why I have all my other symptoms such as fatigue, weakness, dizziness, blurred vision, etc? 

        Yes that is quite possible

 

Does this disease really cause low blood platelets?

           Not sure on this one.

 

How long before I start feeling normal again?

          It can vary. Some get relief pretty quickly others find it takes time. It is not uncommon to have different symptoms resolve at different rates. 

[jkrc717]

 

 

Does this disease really cause low blood platelets?

           Not sure on this one.

 

. 

I've googled this and can't find a real answer. Only speculation. 

 

It's weird because that's how my GI doc diagnosed me. As I mentioned on my original post, my primary care and GI doc didn't catch it. I noticed it when looking at copies of my tests. Was then sent to a hematologist and that whole situation was a nightmare. 

 

When I followed up with my GI doc about month or so later, he was looking through my tests. He said he didn't notice some of the things until he was looking at my latest blood work right then and there. Basically the blood platelets being mildly low. 

 

I had my doubts. I thought he was wrong. I didn't believe I had celiac disease, but the biopsy confirmed it. 

 

My primary care doc wasn't sure about the platelets when I asked either.

 

I think this is something people should really be aware of. If they are having unexplained symptoms including stomach issue's and notice their platelets are low, they should ask to be tested for celiac. 

 

I'm kind of amazed. My GI doc nailed it. I suspect a lot of docs wouldn't have. 

[BlessedMommy]

Welcome to the forum!

 

Congrats on finding the source of your health problems, now you can focus on getting better!

 

As a severe anxiety sufferer myself, I'm pleased to report that my anxiety has improved greatly on a strict gluten free diet.

[IrishHeart]

RE; low platelets (thrombocytopenia) --yes!  to being associated with celiac. but after being on a G F diet for a while, it will likely resolve. 

 

"Celiac disease may also be associated with thrombocytosis, thrombocytopenia, leukopenia, venous thromboembolism, hyposplenism, and IgA deficiency.

 

Open Original Shared Link

 

Open Original Shared Link

 

 

Your GI doc is very wise!! Keep him!! 

 

You wrote:

 

When I followed up with my GI doc about month or so later, he was looking through my tests. He said he didn't notice some of the things until he was looking at my latest blood work right then and there. Basically the blood platelets being mildly low. 

 

I had my doubts. I thought he was wrong. I didn't believe I had celiac disease, but the biopsy confirmed it. 

 

My primary care doc wasn't sure about the platelets when I asked either.

 

I think this is something people should really be aware of. If they are having unexplained symptoms including stomach issue's and notice their platelets are low, they should ask to be tested for celiac. 

 

I'm kind of amazed. My GI doc nailed it. I suspect a lot of docs wouldn't have. 

[IrishHeart]

I'd like to suggest reading Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler, MD

 

It is a fantastic resource for the newly diagnosed and their families and covers just about everything involved with understanding and coping with this disease.

 

You're going to be okay! hang in there.Most of us had all the symptoms (and more!) that you are describing and they can resolve for you too. You just have to be very patient now while your body heals.

[egger]

I read somewhere that everyone with celiac disease is born with it, but it varies when symptoms start (perhaps when the intestines, nerves, etc. become damaged). You have had this a long time undiagnosed and lived on carbs meaning more damage probably happened than if you were on a low-carb diet. I have also never gained weight. It was not until 6 months or more on a gluten-free diet that I started to gain weight. I gained 10 lbs so far...not sure if I will gain more after a year on the diet? Not everyone with celiac disease experiences the severe dizziness you describe. I noticed that gluten made me very dizzy, but I still experienced dizziness on a gluten-free diet. I think it may have to do with my nerves being damaged, which may or not heal within 2-5 years on a gluten-free diet. Severe anxiety is often caused by damaged intestines. My feet are usually cold during the day, but sometimes heat up while asleep. When I mentioned this to a doctor, I was told that I needed to circulate or exercise my legs more, but I do not know if it is the right answer. I do not have hypoglycemia or hyperglycemia myself, but many of the symptoms you describe can also be caused by that. Mostly, I think our bodies are so malnourished like being starved in a concentration camp, which may very well cause many of the symptoms you describe as well. 

 

A distended stomach is a known symptom of celiac disease. Do you have fevers with night sweats? I was told that one with celiac disease might have elevated liver enzymes so night sweats might be a way of the liver detoxifying itself. With Meniere's disease, you can become very nauseated or vomit. I feel that way sometimes, too. I wonder if it is connected to celiac disease...a nerve being damaged or attacked by body. I had to see a hematologist for anemia.

 

I have been thinking of having a bone marrow biopsy done. Was it painful?

[kareng]

I read somewhere that everyone with celiac disease is born with it, but it varies when symptoms start (perhaps when the intestines, nerves, etc. become damaged). You have had this a long time undiagnosed and lived on carbs meaning more damage probably happened than if you were on a low-carb diet. I have also never gained weight. It was not until 6 months or more on a gluten-free diet that I started to gain weight. I gained 10 lbs so far...not sure if I will gain more after a year on the diet? Not everyone with celiac disease experiences the severe dizziness you describe. I noticed that gluten made me very dizzy, but I still experienced dizziness on a gluten-free diet. I think it may have to do with my nerves being damaged, which may or not heal within 2-5 years on a gluten-free diet. Severe anxiety is often caused by damaged intestines. My feet are usually cold during the day, but sometimes heat up while asleep. When I mentioned this to a doctor, I was told that I needed to circulate or exercise my legs more, but I do not know if it is the right answer. I do not have hypoglycemia or hyperglycemia myself, but many of the symptoms you describe can also be caused by that. Mostly, I think our bodies are so malnourished like being starved in a concentration camp, which may very well cause many of many of the symptoms you describe as well.

A distended stomach is a known symptom of celiac disease. Do you have fevers with night sweats? I was told that one with celiac disease might have elevated liver enzymes so night sweats might be a way of the liver detoxifying itself. With Meniere's disease, you can become very nauseated or vomit. I feel that way sometimes, too. I wonder if it is connected to celiac disease...a nerve being damaged or attacked by body. I had to see a hematologist for anemia.

I have been thinking of having a bone marrow biopsy done. Was it painful?

Actually.... People are born with the gene - about 30% of people have the gene. It is not " turned on" until sometime in your life and not for everyone. So, we don't really have celiac from birth.

Open Original Shared Link

[jkrc717]

I read somewhere that everyone with celiac disease is born with it, but it varies when symptoms start (perhaps when the intestines, nerves, etc. become damaged). You have had this a long time undiagnosed and lived on carbs meaning more damage probably happened than if you were on a low-carb diet. I have also never gained weight. It was not until 6 months or more on a gluten-free diet that I started to gain weight. I gained 10 lbs so far...not sure if I will gain more after a year on the diet? Not everyone with celiac disease experiences the severe dizziness you describe. I noticed that gluten made me very dizzy, but I still experienced dizziness on a gluten-free diet. I think it may have to do with my nerves being damaged, which may or not heal within 2-5 years on a gluten-free diet. Severe anxiety is often caused by damaged intestines. My feet are usually cold during the day, but sometimes heat up while asleep. When I mentioned this to a doctor, I was told that I needed to circulate or exercise my legs more, but I do not know if it is the right answer. I do not have hypoglycemia or hyperglycemia myself, but many of the symptoms you describe can also be caused by that. Mostly, I think our bodies are so malnourished like being starved in a concentration camp, which may very well cause many of many of the symptoms you describe as well. 

 

A distended stomach is a known symptom of celiac disease. Do you have fevers with night sweats? I was told that one with celiac disease might have elevated liver enzymes so night sweats might be a way of the liver detoxifying itself. With Meniere's disease, you can become very nauseated or vomit. I feel that way sometimes, too. I wonder if it is connected to celiac disease...a nerve being damaged or attacked by body. I had to see a hematologist for anemia.

 

I have been thinking of having a bone marrow biopsy done. Was it painful?

I had a bone marrow biopsy done because my blood platelets are mildly low. That's why my doctor sent me to see a hematologist. Because no doctor was able to tell me what's wrong with me, I feared leukemia. The test definitely doesn't feel good, but it actually isn't that bad. It's the anxiety and fear of the test that's actually worse. Being scared of maybe having it. When docs can't tell u what's wrong you start to convince yourself that there is no other explanation. Hopefully I never have to experience that again, but if I did, I'm asking to be on an anesthetic. Knock me out. So if you ever get the test done I encourage anyone who is overcome with fear to demand it from your doc.

I have pre-diabetes. Which I had to diagnose myself. Docs usually only test your fasting blood sugar which is a very poor way of testing. I'm positive that my pre-diabetes went undiagnosed for years and caused a lot of damage. I can feel in my body when my blood sugar is too high after eating high carbs. My feet most notably alone with other symptoms flare up.

The disease scared me and the damage bummed me out. I went on a strict low carb diet which is what caused me to lose a lot of weight fast. I was already too thin to begin with and now I'm so insecure to leave my house because I'm a bag of bones.

I read that a low carb diet can cause stomach problems. About a month after starting my low carb diet I started getting stomach issues. Vomiting and pain. This was not part of my original symptom's. My blood platelets were also not low when this first started.

I don't know if this is possible, but I believe the low carb diet caused celiac disease. I didn't believe I had celiac disease and almost skipped out on the biopsy that confirmed it.

The mild fevers I am getting in the evening and night is a fairly new symptom. I did not start out with fevers.

Also, on a low carb diet, you pretty much are not eating gluten. Judging on what I've learned.

I have to stay on a low carb diet because of diabetes's. I have celiac and am very under weight. I'm in a difficult situation. I have no idea what I'm supposed to do. Doctors have no answers for me and my Dietition was no help either. Its very overwhelming at times.

Right now I just trying to keep cool. Trying to find the perfect diet for me. Trying to find a way to add more carbs without spiking my blood sugar, gluten free and gain weight. Its extremely difficult.

Thanks you.

[cyclinglady]

I have diabetes. Well, not anymore according to my latest Ha1c. But it never goes away. I just eat to my meter avoiding those foods that cause glucose spikes over 140.

When you said low carb, did you replace the carbs with fat? And when you said you were a bag of bones, are you below your recommended BMI?

Eat lots more fat. Build up to it. I do not even have a gallbladder and I do well ingesting fats.......BUT, I am 1-1/2 years into the gluten free diet. My intestines have healed. So, keep track of your foods. Pay heed to the advice given to you on this forum regarding celiac disease and the gluten-free diet. Check out the newbie section and learn about cross contamination:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

A low carb high fat diet did not cause your celiac disease. There happens to be a strong link genetically between two (you should determine what type of diabetes you have as you can have several autoimmune disorders, including Hashimoto's Thyroiditis).

[jkrc717]

I have pre-diabetes. Over 140 and less than 200 1 and two hours after eating high carb meal. Sometimes it doesn't even have to be high carbs. I ate a few gluten free corn chips and that spiked me. Some carbs are easier than others.

My bmi is just below normal. I went from 155lbs to 125lbs. 155 is already too low. 125 is way too low. I don't trust what a BMI tells me or some calculator. No 5'9 38 year old man should weight under 140.

Yes, increasing fat is what needs to be done. Also protein. The protein isn't hard if you diet is primarily meats and fish. Too much protein is also bad and will turn to glucose.

The frustrating part is increasing fat. It's easier said than done. Without getting excessive protein and I can't just drink olive oil from the bottle.

So its very difficult. I can't see how I can gain weight like this. Getting the calories is hard on this type of diet. I struggle to reach 2,000 a day unless I overload myself with protein which isn't an option.

Thank you for your response. I appreciate everyone's advice and opinions.

[jkrc717]

Oh and I'm also unfamiliar with the autoimmune disease you mentioned. I've had gallons of blood work done. Have not been told I have anything. So I'm at the mercy of them and am powerless.

I'm close to getting a decent diet. Not there yet as I'm still experimenting, but close.

I can only hope things get better with time or else these doctors are just going to allow me to get worse.

[cyclinglady]

You do not need an excessive amount of protein. I do understand that your body can convert protein into glucose. It sounds like you need more fat.

Seriously, I add refined coconut oil (so I do not taste coconut) to my morning coffee, along with unsweetened soy milk. Most LCHF dieters use heavy whipping cream in their coffee.

Can you tolerate milk products? Many celiacs have temporary lactose intolerances. Cheese contains lots of fat. And nuts or nut butters are good. Olives? Again, some foods are just plain hard to digest when you are first diagnosed with celiac disease.

Has your thyroid been tested?

You should also obtain copies of all your medical records. You are your best advocate!

[jkrc717]

I can't eat dairy or eggs. Caffeine either. I do get copies of my test results. I see what they see. Thyroid came out good. So it's tough. I'm trying and hoping. All I can really do. Thanks

[gilligan]

I've been gluten free for almost a year  and trying to gain weight.  Not an easy thing to do especially when I can't eat dairy.  Do you like avocados?  To get extra fat, I eat avocados, nuts, and spoonfuls of full fat coconut milk  (in the can).  I'm eating bacon every day (yuck as I'm not a bacon fan), and red meat at least every other day.  I make smoothies with peanut butter added. I've only gained 1 1/2 lbs. so, it's very discouraging.  

[jkrc717]

I know what you mean. I can't eat eggs or any kind of dairy. I eat red meat once or twice a day. Ground beef(hamburger) has a lot of calories and fat. I love bacon. The problem is watching how much protein im getting a day from red meat or chicken or fish. Too much protein is not good long term unless your weight lifting. I would eat boat loads of meat. White, red, fish all day and be ok if i wasnt worried about all the protein. Being pre-diabetic, i have to stay low on carbs which limits my foods. I despise avocados, but i try to scarf one day once a day. Nuts are a great way to get more fat. I can eat them all day. However, I just realized the nuts I've been eating has a small fine print on the back saying that they are contaminated with gluten. How frustrating.

[1desperateladysaved]

  You might try some different meats.  I am using elk, bison, duck, yak, and alpaca.  If I could not eat eggs, I would put one of these in my tiny crock pot each night, so breakfast protein would be easy.  My diet recommends 3-5 oz protein foods each meal at least 3 times per day.  You might look into digestive enzymes to help you break down your foods while you heal.  I am praying for you to have the best of healing.

 

Dee

[jkrc717]

  You might try some different meats.  I am using elk, bison, duck, yak, and alpaca.  If I could not eat eggs, I would put one of these in my tiny crock pot each night, so breakfast protein would be easy.  My diet recommends 3-5 oz protein foods each meal at least 3 times per day.  You might look into digestive enzymes to help you break down your foods while you heal.  I am praying for you to have the best of healing.

 

Dee

Super sweet of you. Thank you. God bless. 

[ezgoindude]

 

He had some blood drawn and scheduled a CT scan and Endoscopy. I called for my blood test results and was told everything was normal. He diagnosed me with gastritis after he performed the scope. Gave me omeprazole for the inflammation which helped. I still take it or else my stomach would feel like it's on fire.

 

However, now I'm back to square one. 

 

In 4 months I lost 25lbs. Now I'm trying hard to get the weight back up. Still low on the carbs, but increasing them. It's hard for me to get the calories I need without going heavy on carbs.

 

Then he looks and just then realizes my blood platelets were low. Like I said, very difficult doc. 

 

Does this disease really cause low blood platelets? 

 

How long before I start feeling normal again?

 

Thank you everyone for reading. I hope to get some answers and some advice. 

 

I truly do appreciate it. 

 

God Bless

 

Sup Jk!

 

26 yo dude here and it sounds like you are very similar to what I was pointing out about myself 8 months ago before I became Arizonas new lab rat......

 

Right off the bat I can tell you the low platelets may be influenced by celiac, however, my levels were at their lowest while I was taking the PPIs.

In fact, if you look at the warning page they give you or just search for "low platelets proton pump inhibitor" you'll catch it one of the more "common" uncommon side effects is low platelet count from regular use of ppis.

 

I've had gas and such for a few years but this all hit me sept of last year, in the almost year its happened I dropped from 165 down to 140.  I COMPELETLY agree with ya when doctors say "oh youre perfectly healthy, you're right in the acceptable BMI"  crap.....and I too have not budged from the 140....

 

To be honest I would look into diets like SCD or GAPS, with certain modifications that work for you.  I'm having the worst time with that currently, I'm on an elimination diet to really focus on what my triggers are.  Like you said, hard to due that when you're constantly eating and feel like crap that you weight less than most teenagers......

 

Important question:  Have you done a colonscopy with biopsies?  Or was it strictly through your stomach for the celiac biopsy?

I ask because it wasnt until I got a second opinion that the doctor reviewed my biopsy details and mentioned I could have a mild eosinophilic disease,  which hasn't been researched much until recent years.

 

You may have additonal problems or diseases that may have been influenced by your celiac, or vice versa.  Some being acute, others chronic....... celiac can be very stubborn.

[jkrc717]

Sup EZ, no I haven't had a colonoscopy. I actually requested one, but I was told to wait and see if there is any improvement after going gluten free. I'm also looking for another GI doc for a 2nd opinion. I had the endosopy done with biopsy that confirmed the celiac. Other diseases is my concern. It's like "now what?!". The blood platelets were low before I started taking the PPI. I noticed that also that it could be a side effect. Did yours go back to normal? Do you still have gastritis? 

 

Like I mentioned before, the most frustrating part is just not knowing. Being patient. Being at the mercy of doctors and pretty much powerless. 

[ezgoindude]

My blood platelets have increased, but are still below the average range.  Good news is you've done the bone marrow test ,and that came back negative, I wouldn't worry about the numbers unless additional symptoms insue (if I never took a blood test I would have never thought to have low platelets)

 

yes, back in march of this year when they performed my endoscopy the biopsy returned with "mild chemical gastritis in the antrum".  It was only caught on the biopsy, visually the doc listed no abnormalities seen.

To be honest I think the gastritis was developing at that time because I was still eating foods I didn't know yet that would cause gastro problems (like eggs and broccoli)  and my colonoscopy prep was very rough on my body, I was near paranoid thinking everyone just thinks im crazy and have an eating disorder......

It took me around 4 months but I was able to get the gastritis under control, ( i haven't done another endoscopy but my stomach is now the least of my worries and gives me no pain)  When I was at my worst, I was taking a PPI every morning, then weening it down to 3 times a week, then twice a week, and stopped around June.   What also helped me was to avoid extremely "acidic" feeling foods like citrus, vinegar, raw onion, most tomato products, soda, alcohol, etc.... which I'm still avoiding.

 

I use this forum alot to ask these wise souls of their experiences with celiac and other food intolerances, as I'm just a little ahead of you in that I've been dealing with this for almost a year.  Almost all of my symptoms have been alleviated just by diet alone, except I occassionally am getting gas and loose stools (its not really diarrhea)  and just as in your case, my body weight just seems stuck.

 

     But I wouldn't let that get to you right now,  it sounds really cliche but its good you've got an official diagnosis,  which is something i've yet to get.  Being that your CT scans also came back clean is extremely relieving to hear, that filters out most of the bigger stuff out there,  and who knows, most of your symptoms can be a domino effect from the damage or lack of nutrients celiac brought onto you.

 

 

I added you on the friends list in case you need to rant, and yes, I could rant about the "doctors" here for hours.  All I can to that is if a doctor gives you the "well write a food journal with how you feel and i'll see you next year"  kinda crap I would look into another opinion to light a fire in their @$$, because most often that's where their heads seem to be buddy, lol.  Testing has scientific backing, and can help direct where you need to put your energy into.

[jkrc717]

Thanks EZ

 

I have a question for anyone, Is nuts.com the best place to get certified gluten free nuts? I thought someone here mentioned where or what kind to get, but I don't see it. The nuts I got had a fine print on back that read "packaged with peanuts, tree nuts, soy, wheat(gluten) and milk products" The ones at Nuts.com says it's packaged with everything other than wheat which I'm assuming mean they're safe.. 

 

Also, roasted, raw, organic, salted, unsalted, pasteurized, unpasteurized? Anyone know which is best? 

[JodyM75]

 

Right off the bat I can tell you the low platelets may be influenced by celiac, however, my levels were at their lowest while I was taking the PPIs.

In fact, if you look at the warning page they give you or just search for "low platelets proton pump inhibitor" you'll catch it one of the more "common" uncommon side effects is low platelet count from regular use of ppis.

 

 

 

 

This is very, very interesting to me as I've been on PPIs for about 25 years.  They upped my dose a year and a half ago to 20mg x2 a day, and I've successfully weaned myself down to 10mg x2 a day.  The more I read about them, the more I want off.  I'll have to search for more info on this, thanks!