Seeking Advice, I May Have Celiac

[DeviD]

Hello everyone! I am new here. I went to urgent care for nerve pain last week (hands and feet going numb, tingling, burning etc) My doctor did not want to see me and told me to go to urgent care. I thought the pain was caused from my back because I have a ton of back problems. Anyway, at urgent care the doctor asked if I have celiac disease. I said "No but my grandma does." she straight up said "you have it." no tests nothing, but she has it and said my symptoms reflect the disease. 

Anyways it makes sense to me and I think I might have it. I have a lot of symptoms and I would like others input. Here is a list:

I am a 24 year old female. I am average weight and height.

Migranes every day since I was 14. I had to get a cat scan after I fainted in class. They found nothing and put me on meds that didn't work. When I was 15 I had anemia. At 16 I was vitamin D deficient. I got blood work done a few months ago and no longer have anemia

After that I had terrible anxiety and depression. Put me on meds that didn't work. 

Back problems for no reason (started when I was 18) herniated disk, multiple bulging disks, my disks are loosing fluid, scoliosis,  

Stomach problems, 2 years ago I started to feel nauseous every day, worse in the morning, I'd dry heave every morning or puke. Some days I'd puke up bile. This is still going on. They ran tests on my liver (high liver enzymes and fatty liver) and a gallbladder test, came back normal.

I go poop 5-10 times a day. The stool is always loose. Once in awhile it is solid. Sometimes I go so much, when I wipe I start to bleed and it is painful. I have 3 breaks at work, I go before my break and right before it ends. Its embarrassing. So some days I go number two at work 6 times in one day!

I always feel like I am on my period, I have skinny days where I can wear a size 9 but somedays for no reason I swell up and my size 11 pants are tight and hurt because my pelvic area is tender. I had an ultrasound, they found one cyst. A few months back I lost 15 pounds in two weeks, I could barely eat I felt so sick all the time. Then a few months later I gained 20 pounds in two weeks. I till wasn't eating. I went up multiple sizes and it just hurt. I never have an appetite.

I started to get a random rash, my scalp itched, my knees and my elbows. It went away it was just weird. It lasted about a month and my doc said it was ecsema. 

Now I can't loose the weight. I am vegetarian, tried working out but can't loose anything.  (by working out I mean walking. I literally don't have energy to do anything else) I get puffy eyes. Bad allergies, and sinus pressure every day of my life. On allergy meds that kinda help. I noticed a lot of these symptoms get worse after I eat gluten. I just started keeping track after the doctor mentioned this. I also have just been getting nerve pain, my arms and legs cramp up, my feet cramp up and get stuck, my hands and feet go numb, tingle, and BURN.

I am tired all day every day even if I sleep 10 plus hours. Everyday I feel like I lifted weights and did full body work outs and everyday I feel hungover even though I did not drink any alcohol. I get tired from folding laundry and can barely function. All I want to do is lay in bed. Some days I drink 5 cups of coffee and an energy drink and I'm still tired. 

I also have brain fog and bad memory problems lately. I am messing up at work with the way I feel. I literally feel like my body is telling me something wrong. Sometimes my body aches so much I think I have fibro or (cancer) thats really how bad I feel. One day after my legs were cramping all day I had weird red patches all over my legs. I was freaked out.

Any input would be great. Of course having celiac would suck but I feel so bad every day an answer to my problems would be amazing. I can't keep living like this.

I noticed after I eat gluten, about an hour after, I feel depressed for no reason. Sometimes I cramp up and my stomach is tender. I don't know what to do.  

[kareng]

Sounds like you could have Celiac. Go to your doctor and get a blood test for it.  Keep eating Gluten until all testing is done ( not just blood work)

[DeviD]

8 minutes ago, kareng said:

Sounds like you could have Celiac. Go to your doctor and get a blood test for it.  Keep eating Gluten until all testing is done ( not just blood work)

Thank you for the input. Luckily my Doctor is finally seeing me next week. I called and requested blood work but she wants to know more about my symptoms before she orders it. Hopefully she listens to me and doesn't say its all just from my anxiety (countless doctors told me this)

[Ennis-TX]

6 minutes ago, DeviD said:

Thank you for the input. Luckily my Doctor is finally seeing me next week. I called and requested blood work but she wants to know more about my symptoms before she orders it. Hopefully she listens to me and doesn't say its all just from my anxiety (countless doctors told me this)

Yeah I can relate on the nerve issues,  they take the longest to heal if celiac is the case. BTW you have to be eating gluten daily at least half a slice of bread for up to 12 weeks prior for the test to be accurate. Since it is in your family and I read your story it does sound like it.  I can tell you some things to help with symptoms and help bring you a bit back to normal with the nerve and energy levels. I follow a regime for these msyelf. I personally have to take a sublingual b-vitamin mix called Liquid Health Stress & Energy and Liquid health Neurological support, 1 tbsp each 3 times a day. I get odd if I miss more then 2 doses. Magnesium is another huger one to help, since you have loose stools I would avoid a citrate for now and got with magnesium glycinate. I use Doctors best version of this at times ,it comes in a powder and you mix it in a drink.

You mention your vegetarian ,I am going to suggest some vegan protein powders if you want to help with weight, fatigue. Pumpkin is quite beneficial due to all the nutrients in it. As are several blends but since your not trying to gain weight or body build lets stick to ones that have the best vitamins and nutrient profile. Jarrow makes the most inexpensive, bit gritty but great in porridge, shakes, baked goods. Nutritional yeast is also great for vitamins, minerals etc, but as you probably already know that, just a thought to incorporate it more in your diet as if celiac you  will have issues absorbing nutrients.

I wish you better and report back once you get the testing done, I hope my suggested can ease the burden and bring some "Normal" back in sooner. You can find them on luckyvitamin or amazon. 
 

[geejay]

On ‎11‎/‎4‎/‎2017 at 3:10 PM, kareng said:

Sounds like you could have Celiac. Go to your doctor and get a blood test for it.  Keep eating Gluten until all testing is done ( not just blood work)

 

[geejay]

I'm one of  those gluten sensitive patients who has never received a celiac-positive blood test.  However my doctor was suspicious enough that he performed a "capsule endoscopy" and the results of that showed the gluten damage to my small intestine villi, and confirmed that I am gluten sensitive.  I've since learned that a negative blood test is not always confirmation that you are not gluten sensitive.

 

[Victoria1234]

6 hours ago, geejay said:

I'm one of  those gluten sensitive patients who has never received a celiac-positive blood test.  However my doctor was suspicious enough that he performed a "capsule endoscopy" and the results of that showed the gluten damage to my small intestine villi, and confirmed that I am gluten sensitive.  I've since learned that a negative blood test is not always confirmation that you are not gluten sensitive.

 

Wouldn't that be similar to a positive biopsy, thus confirming celiac?

[DeviD]

On 11/4/2017 at 3:35 PM, Ennis_TX said:

Yeah I can relate on the nerve issues,  they take the longest to heal if celiac is the case. BTW you have to be eating gluten daily at least half a slice of bread for up to 12 weeks prior for the test to be accurate. Since it is in your family and I read your story it does sound like it.  I can tell you some things to help with symptoms and help bring you a bit back to normal with the nerve and energy levels. I follow a regime for these msyelf. I personally have to take a sublingual b-vitamin mix called Liquid Health Stress & Energy and Liquid health Neurological support, 1 tbsp each 3 times a day. I get odd if I miss more then 2 doses. Magnesium is another huger one to help, since you have loose stools I would avoid a citrate for now and got with magnesium glycinate. I use Doctors best version of this at times ,it comes in a powder and you mix it in a drink.

You mention your vegetarian ,I am going to suggest some vegan protein powders if you want to help with weight, fatigue. Pumpkin is quite beneficial due to all the nutrients in it. As are several blends but since your not trying to gain weight or body build lets stick to ones that have the best vitamins and nutrient profile. Jarrow makes the most inexpensive, bit gritty but great in porridge, shakes, baked goods. Nutritional yeast is also great for vitamins, minerals etc, but as you probably already know that, just a thought to incorporate it more in your diet as if celiac you  will have issues absorbing nutrients.

I wish you better and report back once you get the testing done, I hope my suggested can ease the burden and bring some "Normal" back in sooner. You can find them on luckyvitamin or amazon. 
 

Thank you for all the information. I am sorry for the late reply to everyone. I have been feeling worse and worse lately. Got the blood test results, it came back negative. Seeing a G.I specialist in three months (too long for me :/) I've been keeping a food diary and realize I feel worse after eating gluten. After the G.I I want to start the diet. I'm going to call him and see if I can get seen sooner. The bloodwork said theres no signs of inflammation and they don't suspect it to be autoimmune but they want me to do the diet anyway.

I wish I had answers because my vision is getting worse, cramping, nerve pain and trips to the bathroom are amplifying. Meh. Also I have a vitamin d deficiency so I am taking d3 2000iu with vitamin b12. Thanks for the help! 

[DeviD]

On 11/12/2017 at 1:32 PM, geejay said:

I'm one of  those gluten sensitive patients who has never received a celiac-positive blood test.  However my doctor was suspicious enough that he performed a "capsule endoscopy" and the results of that showed the gluten damage to my small intestine villi, and confirmed that I am gluten sensitive.  I've since learned that a negative blood test is not always confirmation that you are not gluten sensitive.

 

I am worried about the cost but I think having that test done would help me rule things out. Either way I need to see a G.I my issues are getting out of control.

[Jmg]

On 4 November 2017 at 5:56 PM, DeviD said:

I noticed after I eat gluten, about an hour after, I feel depressed for no reason. Sometimes I cramp up and my stomach is tender. I don't know what

I just quoted a little part but really much of your experiences could be mine. I won't bore you with it all, but chest pains came from 19, herniated disk came at 21, followed by 20 years of sciatic back pain. Depression at or about the same time. Brain fog little later. There was lots more, primarily neurological. Internally I expected to die in my 30s or maybe reach 40.  Nothing shifted any of it until I changed my diet and inadvertently reduced my gluten consumption.

I went back on gluten for testing, confident I'd found my cause only to test negative. I did keep a diary however and that helped me and my consultant decide that gluten was off the menu for life. 

Couple of things which may be helpful. There is more than one blood test. You may find that one of the others works for you. I never got them all and wonder sometimes if I would have tested positive on another one. You can post your results here if you would like some help in interpreting them.

you mentions feeling relief when you ate less gluten. Are you sure you were eating it up to the test? Removing it may have altered the results.

Finally, once testing is complete, go properly gluten free even if you tested negative on scope and blood. For some people, they test negative but still react. That could be you and give how closely some of my symptoms match to yours it may be the case.

best of luck, you will find this site full of support and useful info. You are not alone in this.

matt

 

[squirmingitch]

You need to get copies of your medical records & especially of the celiac blood tests. Are you sure the correct tests were done? This is why you need to get those records. Here is the current FULL celiac serum panel:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 

Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

If you didn't get all those tests then you didn't get the full panel. Sometimes your insurance won't allow but a couple of them for screening purposes & you have to get a GI to order the entire panel. It's not unusual for people to test negative to the screening. A number of people on here only test positive to the DGP tests.

10% of celiacs are sero negative.

Call the GI every single morning & ask if there has been a cancellation so you can get seen sooner.

You sure have a shipload of symptoms that fit celiac! Add your grandma's celiac diagnosis & it's more than likely you are celiac too.

Yes, keep eating gluten -- I know you don't want too - HUGS --- until all testing is done & then DO give a strict gluten free diet a try for at least 6 months.

[geejay]

On ‎11‎/‎12‎/‎2017 at 7:40 PM, Victoria1234 said:

Wouldn't that be similar to a positive biopsy, thus confirming celiac?

There was no biopsy.  The physician was familiar enough with the villi damage appearance, and  that was his diagnosis.

 

[geejay]

On ‎11‎/‎22‎/‎2017 at 5:09 PM, DeviD said:

I am worried about the cost but I think having that test done would help me rule things out. Either way I need to see a G.I my issues are getting out of control.

The only way to actually see inside the small intestine for any gluten damage is with a capsule endoscopy.  Early AM, your physician gives you a small capsule to swallow that contains a tiny video.  They also attach a "video receiver" to the outside of your body.  During that day, the video records the inside of your entire digestive system.  Once the capsule "exits" your body that day, you take the video receiver to your physician and they can review it to determine a medical diagnosis.  Interesting procedure, right?!!!

[cyclinglady]

1 hour ago, geejay said:

The only way to actually see inside the small intestine for any gluten damage is with a capsule endoscopy.  Early AM, your physician gives you a small capsule to swallow that contains a tiny video.  They also attach a "video receiver" to the outside of your body.  During that day, the video records the inside of your entire digestive system.  Once the capsule "exits" your body that day, you take the video receiver to your physician and they can review it to determine a medical diagnosis.  Interesting procedure, right?!!!

The most common way to diagnose celiac disease is to obtain biopsies via an endoscopy as damage can be microscopic.  However, the pill camera has been able to help diagnose celiac disease if the villi damage is severe enough to be visible on the camera.  The other advantage is that the pill camera goes through the entire small intestine and it can catch other damage like Crohn’s or tumors.  Talk to your GI about which procedure would be best (and what your insurance will cover).  

[Bec the Lemon]

Your symtoms sound so much like mine its scary, I tested positive for it recently however it wasnt the only issue. I also have pcos, depression, and possibly endomirtiosis. I also have the daily nausea, it was at the point they tested me over 10 times in 3 months for pregnancy (annoying af). They kept telling me it was my anxiety and/or I had an eating disorder and nothing more. The only reason they started testing me for celiac is extreme weightloss and vitamin deficiency, it got to the point where I have to go to the ER ever few weeks for IV fluids and ondasetron (probably spelt that wrong, its an anti nausea medication used post chemotherapy). I really hope they dont let it get to that point for you, though is sounds like youre already suffering plenty. Im so sorry. 

[DeviD]

On 11/23/2017 at 12:01 PM, squirmingitch said:

now you don't want too - HUGS --- until all testing is done & then DO give a strict gluten free diet a try for at least 6 months.

Thanks! I am going to get a copy of my results, I do not know exactly what kind of tests they did. But my bloodwork came back I am vitamin d deficient and they said there was no sign of inflammation, which confuses me because I have this new symptom, its like a hug lump behind my knees, ones bigger than the other. It hurts and it's so ugly its like its swollen or something. I'm still eating gluten till I see the GI 

On 11/28/2017 at 2:36 PM, geejay said:

The only way to actually see inside the small intestine for any gluten damage is with a capsule endoscopy.  Early AM, your physician gives you a small capsule to swallow that contains a tiny video.  They also attach a "video receiver" to the outside of your body.  During that day, the video records the inside of your entire digestive system.  Once the capsule "exits" your body that day, you take the video receiver to your physician and they can review it to determine a medical diagnosis.  Interesting procedure, right?!!!

Oh cool, I never knew about that!

On 11/29/2017 at 12:15 AM, Bec the Lemon said:

Your symtoms sound so much like mine its scary, I tested positive for it recently however it wasnt the only issue. I also have pcos, depression, and possibly endomirtiosis. I also have the daily nausea, it was at the point they tested me over 10 times in 3 months for pregnancy (annoying af). They kept telling me it was my anxiety and/or I had an eating disorder and nothing more. The only reason they started testing me for celiac is extreme weightloss and vitamin deficiency, it got to the point where I have to go to the ER ever few weeks for IV fluids and ondasetron (probably spelt that wrong, its an anti nausea medication used post chemotherapy). I really hope they dont let it get to that point for you, though is sounds like youre already suffering plenty. Im so sorry. 

I'm sorry you had to go through that! That's terrible. All I know is things just keep getting worse and I have no answer. Body cramping, my lymph nodes are super tender. Meh the list goes on. Last week I could hardly eat at all. This weeked I finally stuffed my face, then the body cramps got worse. I ate all gluten. I hope you feel better!

[DeviD]

Update: I had my endoscopy last week. Everything came back normal apparently along w/ blood tests. They're sending me a copy of my results. I started the diet yesterday. I am checking my labels on everything and will post updates about my symptoms. So far today I noticed my nausea is a bit better ( did not have to take any ginger root today!) and my headaches were not as bad. I had a few random spikes in energy (surprising) I also noticed this past month that I can't drink coffee, it makes me puke, so I am quitting that too. I used to be an big coffee drinker too. My diet is mainly going to be brown rice, eggs, beans, veggies fruits, (I'm vegetarian but if I feel way better after this diet I might eat chicken and some fish again)

I use separate pots, pans and sponges for all my stuff. Is old Tupperware okay?

I had a ct scan before the endo and they found a diverticula (cyst like thing) growing off of my small intestine (upper right side) along with tiny little ones. The report said it may be due to prior inflammation. 

I'm still trying to rule out all other medical possibilities for the way I feel. Thanks!

[squirmingitch]

Read this, it will help you keep from getting cross contaminated as well as give some fantastic tips.

Old Tupperware is fine if it isn't scratched. 

Now, don't expect miracles right off the bat. It doesn't work that way. AND it can be very much like a roller coaster for 6 months or even a year. Good days & bad days so stay the course & give it a real good test run.