I'm sort of terrified. Please help!!!

[katiedeer]

I'm  a natural born worrier and I always have been. I was diagnosed with celiacs when I was sixteen years old, and I'm nineteen now(going on twenty) Long story short, I've had my fair share of cheats between these times, not exactly eating gluten every day with every meal but just little things(like a doughnut or a roll or something ridiculous like that). I'm just now regretting all of it and realizing the severity of my disease. I've been going strictly gluten free for a while now, with a couple mess ups, like not knowing there's gluten in certain things(And paying for it later... ) 

But now, lately, things have been different. Usually, when I am glutened I have mild cramping, trouble when going to the restroom, mild gas,  and fatigue. But lately I've been experiencing other symptoms(*TMI warning*) Things like extreme abdominal pain(Like I feel like I need to go the bathroom, throw up, and pass out all at once, this also only happens every now and then), weird stomach noises and I'm more gassy than usual, a tight feeling in my stomach/abdomen area, and I've noticed mucus in my stool on one occasion. I've read up on the cancers associated with celiacs and all of the symptoms religiously because I always assume worst case scenario. Should I really be worried? I'm scared that it could be "too late" for me and I could have cancer or have done irreversible damage to my body. I don't know if I'm being silly or not, I feel silly for taking this long to realize I need to be serious about my health and diet. I'm visiting my family doctor by the end of this week about these concerns but I'm worried about what he will say. Any feedback would be so much appreciated. Advice, reassurance, anything to keep me from worrying about this! 

[cyclinglady]

2 minutes ago, katiedeer said:

I'm  a natural born worrier and I always have been. I was diagnosed with celiacs when I was sixteen years old, and I'm nineteen now(going on twenty) Long story short, I've had my fair share of cheats between these times, not exactly eating gluten every day with every meal but just little things(like a doughnut or a roll or something ridiculous like that). I'm just now regretting all of it and realizing the severity of my disease. I've been going strictly gluten free for a while now, with a couple mess ups, like not knowing there's gluten in certain things(And paying for it later... ) 

But now, lately, things have been different. Usually, when I am glutened I have mild cramping, trouble when going to the restroom, mild gas,  and fatigue. But lately I've been experiencing other symptoms(*TMI warning*) Things like extreme abdominal pain(Like I feel like I need to go the bathroom, throw up, and pass out all at once, this also only happens every now and then), weird stomach noises and I'm more gassy than usual, a tight feeling in my stomach/abdomen area, and I've noticed mucus in my stool on one occasion. I've read up on the cancers associated with celiacs and all of the symptoms religiously because I always assume worst case scenario. Should I really be worried? I'm scared that it could be "too late" for me and I could have cancer or have done irreversible damage to my body. I don't know if I'm being silly or not, I feel silly for taking this long to realize I need to be serious about my health and diet. I'm visiting my family doctor by the end of this week about these concerns but I'm worried about what he will say. Any feedback would be so much appreciated. Advice, reassurance, anything to keep me from worrying about this! 

The risk for cancer due to untreated celiac disease is really, really low, especially in a young person.  So, no need to worry.  There are long term complications for not complying with the gluten free diet as you have probably googled.  For example,  most likely some bone damage as this is the time in your life you should be building as much bone as possible or developing another autoimmune disease.  

It is good that you made an appointment with your doctor.  Have him run another celiac panel to see where you stand.  Then work at getting those antibodies down over the next year.   Continue to do follow-up testing as the labs can let you know (besides symptoms) if you are consuming gluten.  

Open Original Shared Link

Celiac disease is like a chameleon.  Symptoms can wax and wane.   I just had anemia when I was diagnosed.  Now, a gluten hit can mean six months of feeling ill.  Gluten is not worth it.  

We are here to help each other, so ask any questions!  

[katiedeer]

Thank you so much cyclinglady!! This really soothes some of the anxiety I had about all this. Gluten is definitely not worth all the stress and pain it's caused me.  Celiac is one of those most challenging things I have ever dealt with, but I love how welcoming the community is. It makes it a lot easier to cope with things. Thanks again!

[Ennis-TX]

5 hours ago, katiedeer said:

I'm  a natural born worrier and I always have been. I was diagnosed with celiacs when I was sixteen years old, and I'm nineteen now(going on twenty) Long story short, I've had my fair share of cheats between these times, not exactly eating gluten every day with every meal but just little things(like a doughnut or a roll or something ridiculous like that). I'm just now regretting all of it and realizing the severity of my disease. I've been going strictly gluten free for a while now, with a couple mess ups, like not knowing there's gluten in certain things(And paying for it later... ) 

But now, lately, things have been different. Usually, when I am glutened I have mild cramping, trouble when going to the restroom, mild gas,  and fatigue. But lately I've been experiencing other symptoms(*TMI warning*) Things like extreme abdominal pain(Like I feel like I need to go the bathroom, throw up, and pass out all at once, this also only happens every now and then), weird stomach noises and I'm more gassy than usual, a tight feeling in my stomach/abdomen area, and I've noticed mucus in my stool on one occasion. I've read up on the cancers associated with celiacs and all of the symptoms religiously because I always assume worst case scenario. Should I really be worried? I'm scared that it could be "too late" for me and I could have cancer or have done irreversible damage to my body. I don't know if I'm being silly or not, I feel silly for taking this long to realize I need to be serious about my health and diet. I'm visiting my family doctor by the end of this week about these concerns but I'm worried about what he will say. Any feedback would be so much appreciated. Advice, reassurance, anything to keep me from worrying about this! 

Symptoms for this disease constantly change, I could go over my story but it would be a few pages. Chances of cancer are low, you probably just got worse reactions now and this is very common, especially as we start to get it out of our system, our body reacts to it coming back in MUCH for violently. Also Cutting it out now is VERY important I was in my early 20s before we got it diagnosed and the damage caused a bunch of other issues...allergies, food intolerance, other AI disease that make it where I can not consume carbs/sugars.....and the obvious things like dairy intolerance etc....got that 10+ years ago.
Point is nip it in the bud now and you have much less to worry about in the future. Here are some links to some foods to make this less daunting PS go whole foods only and treat processed gluten-free foods as treats...the higher starch and sugar ratios in many are not so good for your health lol. I personally am grain free keto.

https://www.celiac.com/forums/topic/120402-gluten-free-food-alternative-list-2018-q1/

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

PS Worry and anxiety go with this disease and will flare up with exposure, this is a combination of nutrient deficiency of B-vitamins, vitamin D, magnesium, etc. Caused by damaged intestines, and in some of us a aspect where our immune system attacks our nervous system and brain. These will cause the anxiety and stress to worsen with brain fog, confusion, and I will admit moments of impending doom feeling. I have to up my anti stress regime with this, and I swear so much by it I doubt I could operate with out it. I use Liquid Health Stress & Energy and Liquid Health Neurological support 1tbsp each 3 times a day. I also dose magnesium to tolerance rotating between Natural Vitality Calm and Doctors Best. The Calm can cause loose stools if you take to much but really helps with the hard stool, constipation issues that come with low magnesium levels (magnesium deficiency can cause constipation). If you want to start magnesium I suggest calm at 1/4 tsp a day then slowly up it over the period of a week or two to the full dose or to tolerance (tolerance refers to it causing loose stools then you dose back)

[GFinDC]

Hi Katie,

Welcome to the forum! :)

You've got some good advice already.  You are catching your celiac disease at a young age, so that helps.  You can avoid a lot of problems some others developed from years of eating gluten before finding out we have celiac disease.

I think the first 6 months of eating gluten-free are very important.  It's a chance for the immune cells to go down and the body to start healing after possibly years for damage.  In celiac the immune attack damages the intestinal lining (villi) that absorb nutrients.  That villi lining is very important to our health as we can't properly absorb vitamins and minerals if it is damaged.  We need those nutrients to heal and grow.

Eating a very simple diet is a good way to go for 3 to 6 months.  Avoiding processed foods means you don't have to spend all day reading ingredient labels in the grocery store.  Things like veggies, plain meats, fruit, eggs etc that are whole single ingredient foods are a great way to go.  This means cooking a lot of your own food but that's a good thing to learn anyway.  There's much less chance of getting glutened with whole, unprocessed foods.

Avoiding dairy for several months can help also, and oats should not be eaten until 6 months to a year.  There are some of us that react to oats also.

[Jmg]

7 hours ago, katiedeer said:

Advice, reassurance, anything to keep me from worrying about this!

Hi Katie

You've had good advice above from the forum MVP's  Do follow it, but one further thing, don't be too hard on yourself for past failings. I find the diet hard now, at 16 I think I'd have responded in just the way you have. 19's a good time to get the diet sorted and let your body properly heal in time for an awesome 20s and beyond!

Most of all...

 

 

 

[Maddiecl]

I have had a very similar experience to yours.  Previously to my celiac disease diagnosis, I had mild abdominal cramping and a little bit of occasional nausea and fatigue, but that was it.  I ended up getting tested for celiac because I also had mucose in my stool which I guess is a sign of inflammation. I have now been gluten free for 2 and a half months and things definitely seem to be getting worse before they get better.   I now have new symptoms similar to the ones you mentioned like lightheadedness, and one episode of passing out,  extreme nausea and fatigue hopefully this is all part of the healing process!

[KeriMary]

I was in your same boat when I was diagnosed. Terribly fearful of cancer and all the damage I unknowingly had done. I don’t cheat, but I’m not as good as I need to be at restaurants (I only order off gluten-free menus but I don’t talk to managers like I should, etc) and I eat out once a week with never having symptoms. My main symptom is absolute, complete brain fog. I am truly not the person I used to be. I’ve always had anxiety, so that wasn’t any worse, but I hate to say this about myself but i got “dumb”. It was my first week in nursing school when I was diagnosed. What a great time, huh? I had to stay at school until midnight-2am 4 nights a week just to try to focus and control this brain fog. I used to be smart, quick witted, and very present in the moment. I know life changes, but my life is busy yet very peaceful and I struggle with this daily. I can’t comprehend medical concepts quickly like before and it’s very depressing. I also have a pretty good diet but have weighed 165 (I’m 5’4”) for three years with doing cardio, training for marathons,  etc..nothing gets this weight off (have had thyroid issues since age 7). Anyways. You are not alone. My doctor diagnosed me 5 years ago and told me to stay gluten free and I never saw him again! No follow-ups... I had no clue I had to! Anyways, I have an appointment upcoming as well. 

Best of luck to you ❤️

[ksymonds84]

Hello,

     I am celiac plus a colon cancer survivor.  Celiac was not a contributor to my diagnosis.  Also, Please don't worry you are very young and honestly colon cancer did not give me any of the symptoms you listed... I mostly just couldn't go at all.  Hodgkins lymphoma has been connected with celiac but we are talking many many many years down the road of not being gluten free.

Stick with your gluten free diet to heal your intestinal lining.  It can take awhile to get the benefits but it does happen.  If you continue to struggle look into dairy, soy or other allergens that could be bothering you.  For  me it is soy.

Good luck and no worrying over things that will most likely never happen but ARE stealing your peace today.

Kathy

[CeliacDaniel]

On 1/24/2018 at 1:28 PM, ksymonds84 said:

Hello,

     I am celiac plus a colon cancer survivor.  Celiac was not a contributor to my diagnosis.  Also, Please don't worry you are very young and honestly colon cancer did not give me any of the symptoms you listed... I mostly just couldn't go at all.  Hodgkins lymphoma has been connected with celiac but we are talking many many many years down the road of not being gluten free.

Stick with your gluten free diet to heal your intestinal lining.  It can take awhile to get the benefits but it does happen.  If you continue to struggle look into dairy, soy or other allergens that could be bothering you.  For  me it is soy.

Good luck and no worrying over things that will most likely never happen but ARE stealing your peace today.

Kathy

I am not sure whether I have Celiac Disease, I have a moderate high QIG-IGA 558, the range is up to 356 I think. I am deathly afraid to get a biopsy, but the VA (veterans affairs) is going to give me the TTG test (blood draw). 

I am 37 years old and I have been to the ER many, many, many times. It is to the point where doctors will kick me out of the hospital. If I accidentally eat gluten or wheat my BP sky rockets and my heart rate will race. I will pass gas and then it subsides. 

Now concerning your colon cancer, did you try any natural remedies or was it purely chemotherapy?

I fear Diabetes, I have read that when you don't eat grains you can develop Diabetes. I know my random Glucose (blood serum) was just 88, which is a nice number. But, I don't want it falling below a certain level. 

[Ennis-TX]

19 minutes ago, CeliacDaniel said:

I fear Diabetes, I have read that when you don't eat grains you can develop Diabetes. I know my random Glucose (blood serum) was just 88, which is a nice number. But, I don't want it falling below a certain level. 

HUH? I went grain free/keto to manage AI disease better. I have never heard of developing diabetes because of it. IN FACT many manage their blood sugar and diabetes after by going grain free. They make plenty of grain free, chips, breads, pasta, pizza crust, etc. I even do a grain free keto bread in my bakery that is a hit among diabetics. If you need help finding stuff I will gladly share with you the products I have found.

[CeliacDaniel]

Yeah I can't recall where I read that, I did, but just don't remember. But there could be a connection. Open Original Shared Link

 

A company is researching that Celiac Disease could be due to a virus, not surprising as viruses have done a lot to the human body.

 

Even from years ago there is a study concluding that an ancient virus might be responsible for human consciousness Open Original Shared Link it's interesting because we can see the relationship between humans and viruses as well bacteria. Though I'd state that bacteria does less harm than a  virus, yet our bodies are swarming with bacteria.

 

Here is the article concerning Celiac Disease and a virus Open Original Shared Link I think that is the main issue.

 

I take celiact a multivitamin to help combat my Celiac issues.

[cyclinglady]

3 hours ago, CeliacDaniel said:

I am not sure whether I have Celiac Disease, I have a moderate high QIG-IGA 558, the range is up to 356 I think. I am deathly afraid to get a biopsy, but the VA (veterans affairs) is going to give me the TTG test (blood draw). 

I am 37 years old and I have been to the ER many, many, many times. It is to the point where doctors will kick me out of the hospital. If I accidentally eat gluten or wheat my BP sky rockets and my heart rate will race. I will pass gas and then it subsides. 

Now concerning your colon cancer, did you try any natural remedies or was it purely chemotherapy?

I fear Diabetes, I have read that when you don't eat grains you can develop Diabetes. I know my random Glucose (blood serum) was just 88, which is a nice number. But, I don't want it falling below a certain level. 

Daniel,

Your Immunoglobulin IgA test was high (out of range), but that is just a control test used in celiac testing to determine if ANY IgA tests (like the DGP IgA or TTG IgA) are valid.  Any elevation does not mean you have celiac disease.  You just have an immune system that is on high alert.  It was just one test captured in time and may have been elevated due to your recent  bout with the flu.  That is a good thing...fighting the flu.  

Please get back to the VA for the TTG test to see if the DGP IgA MIGHT have been accurate.  Other things can elevate celiac antibodies tests or it could have been a simple false positive.  An endoscopy might be your best bet if you are seeking a diagnosis.  

Grains do not cause diabetes.  There is a connection between Type 1 diabetes and celiac disease, but there is one with Hashimoto’s and connections to other autoimmune disorders.  Your multiple trips to the ER would have caught a diabetic issue by now, I think.  I would not worry until you know for sure if you have celiac disease.  

 

 

 

[ksymonds84]

10 hours ago, CeliacDaniel said:

I am not sure whether I have Celiac Disease, I have a moderate high QIG-IGA 558, the range is up to 356 I think. I am deathly afraid to get a biopsy, but the VA (veterans affairs) is going to give me the TTG test (blood draw). 

I am 37 years old and I have been to the ER many, many, many times. It is to the point where doctors will kick me out of the hospital. If I accidentally eat gluten or wheat my BP sky rockets and my heart rate will race. I will pass gas and then it subsides. 

Now concerning your colon cancer, did you try any natural remedies or was it purely chemotherapy?

I fear Diabetes, I have read that when you don't eat grains you can develop Diabetes. I know my random Glucose (blood serum) was just 88, which is a nice number. But, I don't want it falling below a certain level. 

Hello,

     Sorry you are going through a hard time.  Gluten will also give me tons of gas and bloating is horrible!  I don’t  have much experience with diabetes but sounds like by your number you are in normal limits. Haven’t heard of a connection with grains etc.

     I did 14 cycles of FOLFOX chemotherapy but I also used cbd oil that is legal here in CO.  My doctor was cool about it and got me a medicinal license plus cannabis reduced my chemo symptoms tremendously and helped my appetite.  

     Not sure if it was the oil or combination of the two but I shrunk a 6 cm mass in my liver to 3 cm in two months which allowed me to have the liver resection surgery that removed it all. There’s no way I would have gone all natural with my advanced diagnosis.  I trust my oncologist and do whatever he says.  He has me on 4000 dui of vitamin d3 plus one low dose asprin to help from recurrence and especially to keep my breasts safe.

     Please don’t worry about  colon cancer you are very young for that diagnosis unless it’s in your family.  You should have a colonoscopy by 50 or sooner if your doctor suggests it or if in your immediate family.  They told my children to do it by age 40 to catch polyps before they turn into anything because of me.  

     I agree with cyclinglady to get an endoscopy for a celiac diagnosis. You do need to be eating gluten for this to be accurate and if this is too hard remain gluten free to keep your symptoms under control.

     Keep positive and for me I paint (I sell paintings all over the world) and stay busy with my family.  If I have a worrisome thought with health issues especially recurrence, I take a calm breath, allow myself to think about it for a few minutes then STOP and tell myself to live for today no one can predict my future.  Works for me well.

[celiacsojourness]

Immune and Autoimmune responses can be so strange. When I was diagnosed with celiac disease, eating small traces didn't bother me one bit and I had a grace period for getting the hang of the gluten free diet. 2-4 moths later? WHAM - cross contamination could knock me out. It actually got better over time, and a little cross contamination gives me mild symptoms now. Prolonged use of something with cross contamination, however? It grows slowly than hits me like a ton of bricks.

Over time, your antibodies will decrease so your overall reaction should be less. Eating gluten encourages your body to continue producing antibodies, so the reaction will feel stronger over time if your diet isn't celiac-safe. 

Hang in there, and it's always good to check with your doctor just in case. 

[CeliacDaniel]

I just got brand new testing in and wanted to know if someone could help me on this one.

Misc Ancillary Test 12~QUEST DIAG

TEST NAME        RESULT

Hla-DQ2            NEGATIVE

Hla-DQ8            NEGATIVE

Hla-DQA1*         01

Hla-DQB1*        0202

Here are the notes, but regardless of what it says is there anything else I should be worried about?

The patient does not have the HLA-DQ variants associated with celiac disease. More than 97% of celiac patients carry either HLA-DQ2(DQA1*05/DQB1*02) or HLA-DQ8(DQA1*03/DQB1*0302) or
both. Genetic counseling as needed.
Masamichi Ito, Ph.D.,FACMG Director, Molecular Genetics Typing performed by PCR and hybridization with sequence specific oligonucleotide probes (SSO) using the FDA-cleared LABType(R) SSO Kit.

Test(s) performed at:
QUEST DIAGNOSTICS CHANTILLY

CLIA #49D0221801
HLA-DQA1* = 02
HLA-DQb1* = 0501
Hla-DQB1* reported incorrectly as 0501 by [2870-VA691].
Changed to 0202 on Feb 21, 2018@14:57 by [2870-VA691].

[cyclinglady]

4 hours ago, CeliacDaniel said:

I just got brand new testing in and wanted to know if someone could help me on this one.

Misc Ancillary Test 12~QUEST DIAG

TEST NAME        RESULT

Hla-DQ2            NEGATIVE

Hla-DQ8            NEGATIVE

Hla-DQA1*         01

Hla-DQB1*        0202

Here are the notes, but regardless of what it says is there anything else I should be worried about?

The patient does not have the HLA-DQ variants associated with celiac disease. More than 97% of celiac patients carry either HLA-DQ2(DQA1*05/DQB1*02) or HLA-DQ8(DQA1*03/DQB1*0302) or
both. Genetic counseling as needed.
Masamichi Ito, Ph.D.,FACMG Director, Molecular Genetics Typing performed by PCR and hybridization with sequence specific oligonucleotide probes (SSO) using the FDA-cleared LABType(R) SSO Kit.

Test(s) performed at:
QUEST DIAGNOSTICS CHANTILLY

CLIA #49D0221801
HLA-DQA1* = 02
HLA-DQb1* = 0501
Hla-DQB1* reported incorrectly as 0501 by [2870-VA691].
Changed to 0202 on Feb 21, 2018@14:57 by [2870-VA691].

I think you should wisely wait for your doctors to comment.  Did the VA ever run the TTG test for you?  What were the results?  Remember, 30 to 35% of the population carry the genes that COULD  develop into celiac disease.  On a few actually develop it.   It is used to exclude celiac disease and not to diagnose it.  Pretty much most celiac experts say if you do not have the genes, you will never get celiac disease. 

[CeliacDaniel]

14 hours ago, cyclinglady said:

I think you should wisely wait for your doctors to comment.  Did the VA ever run the TTG test for you?  What were the results?  Remember, 30 to 35% of the population carry the genes that COULD  develop into celiac disease.  On a few actually develop it.   It is used to exclude celiac disease and not to diagnose it.  Pretty much most celiac experts say if you do not have the genes, you will never get celiac disease. 

The only other test the VA ran was: GLIADIN Ab,
IgA
25 High U (>< 20)

 

My doctor called me yesterday and talked with me about the test results concluding I don't have Celiac, but will not run any other tests.

 

Also went to the Emergency Room (ER) last night, I ate soy chorizo and soon after had diarrhea but the ingredients are:

Water, Soy Flour, Soybean Oil, Distilled White Vinegar, Paprika, Salt, Mustard Powder, Spices, Garlic Powder, Caramel Color, and Potassium Sorbate (to Maintain Freshness).

Very strange because I have been to the ER twice and too soon.

So I went to the ER on Jan 29 and here are the high results

AST: 34

ALT: 80

Fatty liver on an ultrasound was discovered

Urine PH 8.0

Monocytes 0.9 which is High

Last night on 2/5/2018 I was at the ER and here are the results.

CT scan:

Diffuse fatty infiltration of the liver

sigmoid diverticulosis without evidence of diverticulitis (this was not seen on the ultrasound a month ago)

everything else was normal, even my ALT (73) and AST (23)

Lipase however was 352, the range is 23-300 and on January 29 my Lipase was 21

Blood in UA was moderate, as compared to Jan 29 2018 was negative.

RBC (red blood cell), Urine was 15 the range is 0-3, in Jan it was 0

bacteria in urine occasional and urine mucous was present

and in Jan nothing was seen.

 

If I tell this to my doctors they tell me I'm having anxiety....lol

I can only imagine it now....bacteria in your urine Daniel! What!? You have anxiety, it's your PTSD...lol

But it was late last night and I will call my doctor today, I'm sure she will ignore me, but who knows.