1 year of hell...Celiac?

[SillyWilly]

Hello all, newbie here... I've gone through hell this year physically.  It all started a little over a year ago with stressful triggers like starting my masters program and taking on leadership roles at work and not sleeping because of our beautiful newborn son. But after my third stomach bug, that one had me crying on the toilet at midnight three nights in a row while thinking I was gonna die, seriously, worst stomach pains in my 34 years of being alive. 10 months of loose and yellowish stool, 3 ER trips, 10 doctor visits, 30 lbs. weight loss, and my doctor finally says he thinks it could be Celiac just last week. 

I'm 3 days gluten free and still experiencing undigested food in stool. But the peripheral neuropathy, headaches, and rashes are gone... The one thing that scares me the most is low blood sugar after my first meal (6:30 a.m.) even after I've stopped eating oats and started eating strawberries, beef or chicken or eggs, glass of OJ, multivitamin, 4 apple slices...blood sugar in 60's non-diabetic. I then eat the whole apple and a banana while drinking more OJ to get glucose within normal range. 

Does anybody else get hypoglycemia post-prandial (after meal) from Celiac? Almost like nutrition isn't being absorbed.

p.s. GI doc meeting June 27th to get the diagnosis ball rolling with possible Celiac. I'm sick and tired of being sick and tired ?

[cyclinglady]

Welcome to the forum!  

If you suspect celiac disease, you should remain on a gluten-rich diet until all testing is complete.  I am sorry that your doctor did not tell you this.  Why listen to a possible crazy celiac lady on the internet?  Take the advice of the leading celiac researchers and doctors.  Here's a link to the University of Chicago's celiac website.  It discusses the actual celiac blood tests.  

Open Original Shared Link

Here's more from the American GI Association:  

Open Original Shared Link

Here's a video by A. Fasano, one of the world's leading celiac experts.  Learn more about celiac disease.

So, even if you are starting to feel better, I urge you to get back on gluten.  Why bother getting tested?  It's hard, so hard to be on a gluten free diet.  Seriously.  It's a huge commitment and if there's every any doubt.....you'll cheat.  I won't even get into cross contamination..... Then there's the fact that celiac disease is definitely genetic.  If you are diagnosed, all your first degree relatives should be tested even if they do not have any symptoms.  Some celiacs have no tummy issues at all.  Nothing!  

Finally, the low blood sugar.  Celiac Disease, Hashimoto's Thyroiditis and Type 1 Diabetes are strongly linked.  Since you are monitoring, are you a diabetic?  

I hope you feel better soon!  We are here to help!

 

 

[SillyWilly]

Thank you for the informative links, much appreciated. I am not diabetic, just self monitoring because of the strange symptoms I've experienced this year, one of those being hypoglycemia. All doctors tests negative for diabetes. Stool tests as well, negative for parasite/ bacterial. Used to eat whatever I wanted but wheat, rye, barley don't sit well. Been "allergic" to beer for 10 years now...signs are pointing to Celiac. 

If I eat gluten a few days before diagnostics, won't my inflammatory markers be raised?

[Jmg]

2 hours ago, SillyWilly said:

 If I eat gluten a few days before diagnostics, won't my inflammatory markers be raised?

No sadly, that's to say they may, but they may not. Everyone is different. You'd be risking a false positive or negative. Can't add anything to CL's post above other than to say that's the info that myself and virtually everyone else that self excluded prior to testing wishes they'd known...

No-one here can diagnose you but it sounds very much like your on the right track. You will be desperate to stay with this new diet and see how much further you may improve, but in doing immediately you're jeopardising an accurate diagnosis.   

My advice, start keeping a food diary, note everything you eat, time and how you feel. Further patterns may emerge. Stay on gluten till that appointment on 27th so that blood tests can be accurate. If they're positive you have your answers, if negative and the Dr doesn't want to investigate further then you can still go gluten free. I had negative blood tests and biopsy but my symptoms similar to yours cleared up once gluten free.   

Best of luck! 

 

[squirmingitch]

You need to keep eating gluten until all testing is complete and that doesn't mean just eat some the last few days before testing. Please don't make the mistake so many others have done & think you can "cheat" the system by only having gluten for a couple days before testing for if you do; then you may cheat your son & future children in the end.

You will NEED that OFFICIAL dx in order to get your children tested without a big fight. If any of your kids present with celiac, then they will need the official dx to protect them in school/college. 

[GFinDC]

Right, you can't just eat gluten a few days ahead of the test and expect a positive test result.  You need to eat 1 or 2 slices of bread a day,  but more shouldn't be needed.  I think there is a formula about lbs of body weight and amount of gluten you should eat somewhere.  The point is to keep the autoimmune reaction going so there are antibodies in your blood stream to be tested.  Most of the antibodies are in your gut (where they do the damage) so they don't show up easily in the bloodstream.

[frieze]

5 hours ago, SillyWilly said:

Hello all, newbie here... I've gone through hell this year physically.  It all started a little over a year ago with stressful triggers like starting my masters program and taking on leadership roles at work and not sleeping because of our beautiful newborn son. But after my third stomach bug, that one had me crying on the toilet at midnight three nights in a row while thinking I was gonna die, seriously, worst stomach pains in my 34 years of being alive. 10 months of loose and yellowish stool, 3 ER trips, 10 doctor visits, 30 lbs. weight loss, and my doctor finally says he thinks it could be Celiac just last week. 

I'm 3 days gluten free and still experiencing undigested food in stool. But the peripheral neuropathy, headaches, and rashes are gone... The one thing that scares me the most is low blood sugar after my first meal (6:30 a.m.) even after I've stopped eating oats and started eating strawberries, beef or chicken or eggs, glass of OJ, multivitamin, 4 apple slices...blood sugar in 60's non-diabetic. I then eat the whole apple and a banana while drinking more OJ to get glucose within normal range. 

Does anybody else get hypoglycemia post-prandial (after meal) from Celiac? Almost like nutrition isn't being absorbed.

p.s. GI doc meeting June 27th to get the diagnosis ball rolling with possible Celiac. I'm sick and tired of being sick and tired ?

why did the doc not send you immediately for blood work, that was not a bright move on his/her part.

[SillyWilly]

I agree, thinking about changing doctors but too worried about starting HMO process with referrals all over again. I will eat slices of wheat bread daily to keep the antibodies up even though that scares me too because of the malabsorption and fatigue. Although I'm already fatigued and weaker than I've ever been. 

[squirmingitch]

I know it's a b%$@# to go through. {{{{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}

Some people find it easier to eat the bread before going to bed; they find it helps the worst of the symptoms b/c you're sleeping (hopefully) so when you get up it's not as bad as if you ate the bread during the day. Keep calling the GI doc for a cancellation -- call every single day. That should get you in sooner b/c someone is bound to cancel at some point.

Hang in there! We're here for you.

[cyclinglady]

Great advice from everyone!  In the meantime, if you have celiac disease, you might be lactose intolerant.  The enzymes to digest lactose are usually released from the villi tips.  When those are damaged you can become lactose intolerant.  Often this is just temporary until healing begins (or not if you are genetically doomed to be lactose intolerant.  Other enzymes might be missing too, so a supplement (that's gluten free) can be considered.  Think about eliminating dairy and that should help reduce some of your symptoms until you can get the celiac blood test.  But keep eating gluten! 

HMO?  My folks have Kaiser (excellent rating with Consumer Reports), but when they went in for testing they only received the TTG IgA and the IgA deficiency screening test.  This test is great and was considered the best for screening for many years.  But it doesn't catch all celiacs like me!  So, a full celiac panel is your best chance of getting a proper diagnosis (besides intestinal biopsies via endoscopy).  I know for sure that a Kaiser PCP can not even order a full panel (even if they wanted to), but a GI can.  Best to arm yourself with some of the information I provided to you earlier, supporting the full panel.  Best to put things in writing (via snail mail or the patient portal.  Then the HMO  or any doctor will need to respond.  This is a lot to do on your own when you are feeling so sick.  See if your spouse or friend can help you or at least go with you to your doctor's appointment.  You'll be less likely to get a brush off.  

My GP never caught my celiac disease diagnosis.  I presented with anemia and not tummy issues.  It was my GI during a consult for a colonoscopy (yep, the over 50 club) who caught my diagnosis after he included an endoscopy and the full celiac blood panel.  Afterwards, my GP (who is the most intelligent of his practice) admitted that he knew nothing about celiac disease.  When I presented him with legitimate studies and suggested courses of care for a celiac disease, he easily complied.  

Do you ever have high post-parietal numbers (e.g. over 140) when testing your glucose levels?

celiac disease can impact many organs.  It's systemic.  There are over 300 symptoms attributed to celiac disease.  Unfortunately, many people fall through the cracks and miss a proper diagnosis because many doctors still believe that you should be a small malnourished child if you have celiac disease (like all Type 1 diabetics should be kids).   Not true, but many doctors do not keep up.  It's a shame.  But given the time they must take now to document each patient, I can see how it happens.  So, it's best to be your own health advocate and help your doctor.  Some like it and others are offended.  Luckily, my GP has an open mind.     

Hang in there!  

[SillyWilly]

Great advice Cycling Lady, thank you. Yes, I have glucose readings of 150-165 on occasion 30-45 minutes after eating but they always return to baseline within 1 hour after eating (under 120-130) and two hours always under 100. I told my doctor last week and he ordered blood work including A1C. I'll go tomorrow to lab. Is 150-160 a normal spike for non-diabetic or am I showing pre diabetes tendencies with occasional spikes over 140?

[SillyWilly]

And yes, Lactose or dairy gives me trouble. ? Thank you all for reaching out by the way, it's a scary situation 

[cyclinglady]

22 hours ago, SillyWilly said:

Great advice Cycling Lady, thank you. Yes, I have glucose readings of 150-165 on occasion 30-45 minutes after eating but they always return to baseline within 1 hour after eating (under 120-130) and two hours always under 100. I told my doctor last week and he ordered blood work including A1C. I'll go tomorrow to lab. Is 150-160 a normal spike for non-diabetic or am I showing pre diabetes tendencies with occasional spikes over 140?

I am not a diabetic expert or a doctor, but after I hit my first fasting at 100 one year after my celiac disease diagnosis, I started researching.  I found Blood Sugar 101 website.  The administrator, Jenny Ruhl, had some excellent advice.  I learned to test myself watching for post-prandials going over 140.  Why?  Gee, I already had to modify my diet to be gluten free.  I could not believe that I was developing diabetes.  My GP told me to exercise more and consume less sugar.  What? I am in great shape for my age (always).  I even teach exercise classes besides, riding, swimming and running.  Give up my gluten-free cupcakes?  Ugh!

But the writing was on the wall.  It does run in my family.  There is a gene line between celiac disease and TD1.  So, I tested for six weeks and charted.  Was definitely insulin resistant.  Presented data to my GP.  He told me to keep doing what I had been doing (Low Carb, High Fat diet after recording high numbers up to 180) and that yes, I was insulin resistant.  We agreed not to test for GAD antibodies since the treatment was the same for a few reasons.  Now, when I go in my HA1C is normal and so is my fasting.  It's been two years.  I am the same.  If I cheat (and I do but never with gluten), my blood sugar goes up (I eat to my meter).  So, I think I am a TD2.  Hopefully, with diet alone I can manage.  I have lots of drug allergies and my gut is ravaged, so taking meds like Metformin is out for now (would rather be on insulin).  I was hoping that it was just a celiac symptom that would pass, but it is not.  

Again, you have to be your own health advocate!  I hope you find this helpful.  

 

[icelandgirl]

2 hours ago, SillyWilly said:

Great advice Cycling Lady, thank you. Yes, I have glucose readings of 150-165 on occasion 30-45 minutes after eating but they always return to baseline within 1 hour after eating (under 120-130) and two hours always under 100. I told my doctor last week and he ordered blood work including A1C. I'll go tomorrow to lab. Is 150-160 a normal spike for non-diabetic or am I showing pre diabetes tendencies with occasional spikes over 140?

Hi Willy,

Since you are getting blood work done tomorrow, why not ask your Dr to add the celiac panel to the list of tests?  Your GP should be able to order the blood tests for you rather than waiting until your GI appointment.

Just a thought...I wish you all the best.

[cyclinglady]

30 minutes ago, icelandgirl said:

Hi Willy,

Since you are getting blood work done tomorrow, why not ask your Dr to add the celiac panel to the list of tests?  Your GP should be able to order the blood tests for you rather than waiting until your GI appointment.

Just a thought...I wish you all the best.

(Smack head!)  Why didn't I think of that?  In anycase, Willy might be able to at least get the TTG IgA and the IgA deficiency test (control test in celiac disease).  He'd still need to keep consuming gluten (you know that, but he might not!)

[SillyWilly]

Good idea Iceland girl, I will ask my doctor for these tests .

[Sugarcube]

17 hours ago, SillyWilly said:

......All doctors tests negative for diabetes. Stool tests as well, negative for parasite/ bacterial. ....

FYI its difficult to detect parasite from stool tests. I had similar symptoms that you describe in your first post. My Parasite was only detected after an endoscopy. 

[Awol cast iron stomach]

Hello hope you are on your way to a proper diagnosis ASAP. After glutening I get issues with lightheadedness and to me low blood sugar. I find eating a small snack every 2-3 hours helps. With glutening I lose the ability to handle many foods initially so dairy is out of question for me. I find carrots, Apple's, and peanut butter are safe for me and effective to restore me to some normalcy. When I get that feeling, I know I have to eat so carrots and apples travel with me daily for weeks after exposure to keep lightheadedness and low sugar symptoms at bay I am active at work and keep them on me.

Good luck. 

[SillyWilly]

Hey AWOL I just had an Endoscopy two days ago and Doctor found a Hiatal Hernia as well as inflammation of stomach (Gastritis). I've reintroduced gluten as well to find results on blood work next week. During the procedure the Doc took biopsies for Celiac and other disease. The hernia explains chest pains, cardiologist says my ticker is good and stomach inflammation explains the year long digestive issues. I don't want to take PPI's or H2 blockers YET, will try to heal with diet and stress reduction. Even if negative Celiac results, I will stay away from gluten as it is a major cause of inflammation! After my fast for the procedure, my blood sugar has been more stable, maybe there is benefit to intermittent fasting? Also I was on asthma inhaler for a month, but glucose levels were off for a month after being inhaler free. They are called glucocorticoids for a reason. American Pharma is a tornado of drugs and I will not be sucked into that tornado any longer!

[SillyWilly]

A1C results are coming next week, fingers crossed 

[Jmg]

On 6/13/2016 at 1:18 PM, SillyWilly said:

I agree, thinking about changing doctors but too worried about starting HMO process with referrals all over again. I will eat slices of wheat bread daily to keep the antibodies up even though that scares me too because of the malabsorption and fatigue. Although I'm already fatigued and weaker than I've ever been. 

Aside from the gluten, eat healthily, take B supplements, fish oil and a multivitamin.

6 hours ago, SillyWilly said:

 The hernia explains chest pains, cardiologist says my ticker is good and stomach inflammation explains the year long digestive issues. I don't want to take PPI's or H2 blockers YET, will try to heal with diet and stress reduction. Even if negative Celiac results, I will stay away from gluten as it is a major cause of inflammation! 

 My endoscopy revealed hiatus hernia but no celiac. The chest pains I've suffered for years were very intense, felt like heart attack. All stopped since gluten free. So I think whatever the results, staying away from gluten may be good decision for you. 

All the best