Sunshine Sassie

Hi Mrlkandee,

I'm sorry to hear about the rough time you've been having! I can't imagine how challenging it must be to have Celiac without having symptoms that let you know that your body is reacting to gluten. As much as I hate having symptoms, I can always tell when I've ate something with gluten and then can avoid it to prevent pain/damage/havoc in my body.

I developed depression and heightened anxiety a little over a year ago. The same time I also developed severe bloating, pain in intestines when I ate and had a bowel movement, tender stomach, gas, and pain in my hips. All of these symptoms (including the depression and anxiety) are what I experience when I eat gluten  . I've spent a lot of time wondering if the depression is a result from the rest of my symptoms or if the gluten is physically causing my depression. I strongly believe that the gluten affects my mental state. As bad as my digestive symptoms are on gluten; it's ultimately the depression and mental state I just can't cope with.

Now hopefully I can respond to some of your questions  I am not familiar with the supplement GABA and I have not tried acupuncture before so I'm not much help there but I do currently take a low dose anti-depressant for pain related to my digestive issues. My GI prescribed my 25mg of Amitriptyline. I've been told that this low of a dose doesn't treat depression but helps relieve chronic pain. Honestly I don't know if it has helped my pain or if my gluten free diet has been the one to resolve my pain but I continue to take. One benefit is that it helps me sleep at night. I don't know if you have trouble sleeping but this is the time where my anxiety was the worst, so this has really helped cut down my anxiety.

I believe there is a high chance you are getting glutened at places where you eat at. Since you don't know when your body is reacting, you could be very sensitive and not even know it. Eating out 90% (if not more) makes me have a reaction. If this is the case I'm hoping your anxiety levels drop if the chances of gluten are removed. That would be ideal since you are not wanting to pursue more medication (and I don't blame you!)

You are going through so much right now and it sure is frustrating to decide if taking medications will help you or harm you. It doesn't take long for my mental health to improve after I've completely eliminated gluten (3 days to a week). And the smallest amount of gluten can set me off. I know it is so hard and overwhelming but this board helps me cope and I hope you can feel better very soon!

Hey there littleburgy, I've been playing the "chase the diagnosis" game as well recently! I just had an endoscopy with a negative biopsy and my blood work couldn't confirm or rule out Celiac due to my IGA deficiency. I possibly could have Celiac or NCGS but I know my reaction is negative towards gluten.

I understand how frustrating and confusing it can be. I am not pursuing any more testing as of now; just working on feeling better and eating gluten free. I am just grateful that the treatment for Celiac and NCGS are the same (gluten free eating) and doesn't have to be prescribed by a doctor! Maybe in the future they will come out with different tests that are easier to diagnose or rule out Celiac 

Hey Casy, I'm in the chronic constipation club as well so I thought I'd say hi. We share a lot of symptoms (constipation with mucus, gas, bloating, rash, problems with menstrel cycle, I even have those cracks at my mouth!) I just finished up with a lot of testing and my conclusion so far is that I am either Non Celiac Gluten Sensitive or early stages of Celiac. You may be in the same boat as me or something else could be going on but I know those symptoms combined can make you miserable!

I was convinced at first that these symptoms we share had nothing to do with what I ate; I didn't understand how something I ate my entire life could be doing this to me! It took me awhile to realize how and when my body reacted to gluten. I figured I'd have an obvious reaction but I learned that everyone has a different reaction time ranging from a minute to a day or two after. If I were to eat a piece of wheat bread today I'd get pain in my right hip about twenty minutes after but be fine for the rest of the day. But the next day is when I really react-and it will happen when I go to eat something (gluten free or not) and I will start bloating up like a balloon and have gut wrenching gas. This will to continue to happen every time I eat or have a bowel movement (basically when ever my system moves) until it's out of my system completely. When I eat gluten continuously the bloating never goes away and the gas pains come and go so it was really hard to tell that I was reacting to gluten before hand.

I made the mistake of going gluten free before getting tested and it delayed my testing by about a year! I know it's tempting but I would definitely continue to eat gluten so you can get tested and get your answers as soon as possible. I'm not sure if you could have your rash looked at and tested too? I hope you post what happens at your doctor I'm interested to find out.

Hey firsttimemama2014, I was just checking the forum to see if you had received your results; I wasn't even aware that inconclusive could be a result and that is even more frustrating than my results!  After being told I most likely had it my biopsy came back negative  and I was more confused than ever. I started a new topic titled, Can I Officially Rule Out Celiac and received some great advice that would relate to you as well! I would hate for you to have to go through another endoscopy after the stress you endured from the first one   Did they give you an explanation for why it was inconclusive? Also nvsmom told me it would be helpful to post my endoscopy results; that way we could get some feedback from people who have a lot of insight to what they mean. I want you to find more answers!

murphy203 I am so happy you received some answers! But I am also sorry that you do have the disease that can cause you damage. I know we're both in the same mind-set when you say you need more assurance because of how much involvement is required to live the rest of you life gluten free! It's daunting how much work ahead it would be avoiding cross-contamination, eating out, explaining to others why you can't eat the pizza everyone is eating at work, holidays, birthdays,cosmetics, and many more challenges I haven't even encountered yet! I completely understand your need of assurance.

I also wanted to give a special thank you to nvsmom! You have responded to so many of my posts in the past and I was hoping you'd respond to this particular one (and you did ).

My endoscopy results I received right after my endoscopy said: Duodenal mucosal changes seen, suspicious for Celiac Disease. I know it's not much; I didn't know if people usually get another report of the biopsy?

I wish I had more answers from my blood work (although like you stated the IGA deficiency could possibly be part of my answer). Although if I didn't have the deficiency and received a positive blood test (and negative biopsy) I suppose I would still be seeking reassurance that I really had it (I can't win with myself lol).

Again I would like to thank murphy203, T T, Firttimemama2014, nvsmom and everyone on this forum who is taking time to reply to posts. This board was what got me through this week and I wish I felt this support from another board I am in for my constipation. I've felt devastated this week after waiting three years to finally get an answer from my colonoscopy. I was so relieved to find out nothing was seriously wrong and my colon was fine but now I am more scared than ever of how I will ever resolve my bowel movement problems. But I'm feeling much better now after receiving everyone's advice and after a week I am finally starting to see results from my gluten free diet. I'm realizing that even though I am still fuzzy on being NCGS or Celiac I actually did get an answer: I know after one year and the gluten challenge I can finally be positive that the reactions I have are to gluten and it's not in my head. It took me awhile to convince myself; I just couldn't believe my body could be reacting so crazy from something I've eaten my entire life! At least I can manage my gluten related symptoms and who knows maybe after time being gluten free my constipation will resolve or at least get better. Thanks guys

Murphy203 I can't imagine how much more frustrated I'd be if I had tested positive and still did not receive a diagnosis! I'm glad you're having more tests done and I know it's in a month and a half but I hope you'll post what you're results turn out to be.

And Triticum Toxicum, you're describe exactly how I feel...I've constantly questioned myself too for the last year or think that maybe my pain isn't as bad as I think. But I don't think that we would be so desperate for answers if it was in our head; I believe what we feel is real. I like what you mentioned about looking forward to new testing being available in the future. Thank you for sharing your story with me.

Sorry to hear that murphy203, what were your results?

And thank you BlessedMommy I've read in your posts that you could not finish the gluten challenge to get tested because of your high sensitivity to gluten I guess all that matters is we feel better. I think I'm most upset about not having a reason for the cause of my chronic constipation. I thought maybe my intestine was damaged and once I healed it would help resolve it.

Hi out there, I recently posted about my fears of having an endoscopy/colonoscopy done; I completed both last week and afterwards the doctor told me she thought I had Celiac because of how my small intestine looked (mucusol changes, suspect celiac is what the report said). The results came back negative. I'm confused why she told me she thought I had it and now I don't

I'm IGA deficient and all of my symptoms clear up (besides constipation) on a gluten free diet.

I had some helpful responses on my last post but I'm still confused if I can officially rule out having Celiac.

I feel like I'm just chasing down an answer. I just don't understand how I can feel so terrible and nothing be wrong with me

Hi LeahRuth, I am sorry you are feeling so unwell and it sounds like you are in tough situation since all of these tests are so expensive. I am also in my early twenties and have spent years without insurance until recently; it is very frustrating 

I have been following this board for almost a year and I hope it can help you like it has helped me. I am awaiting the results of my endoscopy and have not been officially diagnosed so I know how much it stinks to not know what is wrong with you. If you can continue to eat gluten it will help speed up your testing process. I made the mistake of going gluten free before testing and I will say it is physically and mentally harder to go back to eating after you've stopped.

I hope you can find some answers and start feeling better.

Thank you to jddh and Gemini for giving me some feedback about the possible outcomes of my biopsy. I'm still in the mind-set of "I don't want anything to be wrong, but I want to find something so I can have a solution" lol

Firsttimemama2014, what are the odds we had our endoscopy done on the same day!   I certainly want to know how your results come back!

Hello and a big thank you to everyone who replied to this post! I apologize for posting so late; shortly after I started this topic my state was hit with a huge ice/snow storm that left my parents and grandparents without power for almost a week! Everyone is now with power and the snow has melted for now 

Every one of you who posted made me feel more and more confident and less scared about the procedure...thank you for replying to me    It was nice to read everyone's experiences.

I just had both procedures done this morning and I am happy to report it wasn't as bad as I thought (you guys were right) and my colon is perfectly fine. My doctor told me she thinks I do have Celiac because of the condition of my small intestine (I am really glad I pushed for the endoscopy to be done). Now I am left with a question I am sure many of you have faced: what if the biopsy comes back negative? What does that mean?

Firsttimemama2014 you and I sound like we have the exact same fears! I hope some of these replies eased your mind like they did mine. I just had to tell myself that I could be hurting myself worse if I don't find out what's wrong. It also helps me to know that they perform them on children and if children can do it I thought surely I can too  But I understand your anxiety with being put to sleep and I was also worried about Joan Rivers...as far as I could read she was having something done with her vocal cords which I believe caused her throat to swell (she wasn't being tested for Celiac) plus there is a higher level of risk on any procedure when you are in that age range. Hope that helps a little, it did me.

Hi everyone,

I'm scheduled to have my first colonoscopy (for chronic constipation/abdomen pain) and endoscopy (for Celiac testing, low IGA) in March. I've been waiting to have these tests for almost three years (finally have insurance) but now I am so scared and nervous. I'm 26 and have only been put to sleep once to have my wisdom teeth removed. I think the part that makes me the most nervous is being put to sleep. I also am not fond of things being inserted into me both ways!

I'm scared they'll find something horribly wrong and then I'm scared they won't find anything wrong and I won't know what to do.

I'm probably being a huge baby but if anyone would like to reassure me on how safe these procedures are it would be much appreciated. Also, was anyone else's colon/endo done at a doctors office instead of a hospital?

Thank you so much for taking the time to help me Squirmingitch. I really appreciate it, you've been very helpful and I'm going to read through these posts to learn more about D H and if I can identify with it or not.

I'm sorry to hear you both suffer from D H What I meant by "does it lose it's itch" was does the rash ever come to a point where it's still physically there but no longer itches? I know that sounds strange but mine has kind ve become crusty and has completely stopped itching. I'm relieved the uncontrollable itch has subsided but I can't figure out why it's still there.

I apologize I spelled you name wrong in my last post (Squirmingitch). Do you have D H ? If you do does yours lose it's itch?

Thank you for the quick response Suirmingitch! and thank you for the great advice! I did not know the lack of gluten consumption and the steroid shot would interfere with the diagnosis. I'm sure glad you replied you saved me and my insurance some money on a wasted dermatologist appointment.

I wish it was easier to rule out/get a diagnosis of Celiac!

Hi everyone,

I've returned after a few months seeking some more helpful advice. I learned a great deal of knowledge from here and I must say this is a top-notch forum! I am currently diagnosed with IBS-C and have been following some other forums but I must say this is by far my favorite! Everyone who responded to me in the past were more than supportive, positive, and genuinely cared 

Short re-cap of my story:

Constipation (Never have the urgency)

Symptoms that only appear when consuming gluten: Extreme bloating, cramping of intestines and raw feeling, gas, mucus in stool.

I have been tested for Celiac Disease twice by blood but have a low IGA/IGA deficiency. My plan was to start eating gluten again to get a proper diagnosis, but I can't bring myself to last longer than four days. I've attempted many times but I just can't do it.

Over Christmas I accidently consumed gluten quite a few times and still have not recovered. I've developed a strange rash on my hands in the last week which has had me scratching my skin off! I am prone to dry skin but I can tell this is different. It is not improving with lotion like normal dry skin and I haven't changed any products. It has also completely stopped itching since Monday but doesn't look any better. I went to my primary care doctor and he told me my skin was inflamed and it looked like Dermatitis. I am aware there are different types of Dermatitis and it doesn't mean it is Dermatitis Herpetiformis but wonder if I should seek out a dermatologist and have it biopsied? My doctor gave me a steroid shot and cream but it hasn't changed the rash so far.

I'm scared by the time I get an appointment with a dermatologist the rash will be gone. I would hate to miss this opportunity of confirming a Celiac diagnosis without having to do the gluten challenge. Any thoughts would be much appreciated.

Marie

Hi everyone,

I had my first GI appointment today (for colonoscopy) but the GI seemed to think my case wasn't severe enough to do a colonoscopy; or any other tests. I am pleased to hear that information (was not looking forward to a colonoscopy) but disappointed that he would not run any other test (x-ray, etc.) I feel like I am in too much pain for it to just be IBS. He prescribed me an anti-depressant to help cope with the pain and told me to take Miralax once a day for a month and then come back.

I have been experimenting with gluten since May and know that it contributes to my pain if not is the cause. I didn't bring it up to him because I felt like he had his mind made up that I have IBS and was scared to say anything.

Does anyone have any advice on bringing up gluten to your doctor? I feel like the doctors don't understand how severe my symptoms are and do not take me seriously. I may have a complex about it because I am only 25.

I am eating gluten every day to be tested; if I ever get the courage to bring it up to my doctor. I have had a blood test when I was not eating gluten and it came back negative and IGA deficient.

Hi Lorrie,

I can relate to a lot of your symptoms (chronic constipation, intestines feeling like steel, boating).I do not know if I have Celiac disease, Non-Celiac gluten sensitivity or just IBS (my first G I appointment is next week). But I can relate strongly to the overwhelming feeling and crying at the dinner table You are not alone! I get so discouraged though out the day; some things that help me when I'm not feeling well are comfy clothes, a bubble bath, and some TV. This forum also has helped me a lot and I hope it helps you too

Hello again I went to the doctor today to get my print out of blood work results and it did help me understand them better but unfortunately I became confused once again.

Celiac Panel 10   RESULTS ABNORMAL CLASS

IgA                                                68 mg/dL   LOW                  (Reference Range 69-380)

Endomysial Screen                     Negative

tTG Ab, IgA                                     1.7 U/mL

Gliadin Peptide Ab, IgG                  3.0 U/mL

Gliadin Peptide Ab, IgA                  1.5 U/mL

tTG Ab, IgG                                    4.9 U/mL

Reference Range:

<20 Negative

20-25 Equivocal

>25 Positive

It appears to me that the only thing abnormal was my IgA level was too low (I'm trying to understand how that can skew the whole Celiac Panel). Although the reference range next to it says 69-380 so if I would have been one point higher it would have been normal? I'm also keeping in mind that I was not consistently eating gluten before being tested

Thank you nvsmom for more advice on what to do next I called the doctor today and asked what specific blood tests I had done. She started going through the list and when I asked her about the Celiac she said that it came back abnormal so they ran more tests to see if I had Hepatitis; which was negative. When I asked what it meant for the Celiac test to be abnormal she just said they only tested me for it to make sure my liver was functioning correctly and went on to ask me if I was taking any kind of medication every day. I take erythromycin (antibiotic) twice daily for the side effect of speeding up my system to get the urge to have a bowel movement (I suffer from chronic, chronic constipation.)

I would love your advice on what an abnormal test result means. I am confused why they told me all of my tests were negative. I wanted to ask what specific Celiac test they performed like you recommended but I felt like she misunderstood how concerned I was about Celiac and continued to talk about my constipation and medication. I am not very forward so it is not her fault but I may stop by and get my results on paper.

Thank you so much to nvsmom and NatureChick for taking time to give me some insight for my symptoms. Your advice really brightened my day and it is very helpful to hear the opinions of other's who are more advanced on this topic than myself.

I have continued to eat gluten free and feel like a new person. I do not feel like a person who has anything wrong with them anymore. This is how I felt after my first elimination of gluten experiment.

That being said I received my blood test results today and they were negative. I am not sure what specific tests they ran. The doctor said food allergy test and Celiac Panel. I see a GI in late July and will request if I can have an endoscopic biopsy done when my colonoscopy is performed.

So should I start eating gluten again? I just so tired of being sick I am sure almost everyone on this forum can relate to this feeling. I really just can't believe how much better I feel and if this is the answer to my symptoms I never want to go back again!. Although it is important for me to have a proper diagnosis because a gluten free diet is a full time commitment and I do not want to change my lifestyle this dramatically if it is not needed. Regardless if I have Celiac Disease or a gluten intolerance, I have a newfound respect for everyone who must avoid gluten. It is hard all the way around.

Thank you for your response! It is nice to find someone who has noticed this. I am not sure if mine is this or not (currently being tested for Celiac) but it's nice to know it's a possibility and not just in my head. I have had an uneven small bulge in the middle of my stomach for sometime now and it has grown in size. Nothing dramatic enough for anyone to notice but me. I am underweight and am not pregnant so I am baffled to what it could be. I have had a stomach x-ray and three doctors examine me but they couldn't find anything.

Hi guys I am still new to learning about Celiac disease. I don't understand what it means for the intestine to become inflamed? What physically happens to it? Does it swell up or just become irritated? Can it swell up to the point where you can notice it from the outside of your body?

Hi guys, I am excited to post on this forum and talk to people who are feeling like I do! To make a (long) story short I'll give the rundown of my symptoms. I've always had difficulty with constipation (never will get the urge) but in the last two years it progressively has gotten so bad it has controlled my life. I have been able to get it somewhat under control with different methods and medications but in April I started experiencing new symptoms:

• Extreme abdominal bloating
• Pain in the intestines (mostly when and while I am eating and after having a bowel movement)
• Bruised feeling in the intestines
• Joint pain (in hips)
• Loss of period
• Undigested food in stool
• The middle part of my stomach always, always sticks out in a weird shape. (I can only tell this when I'm not bloated which isn't very often)

I lost ten pounds rapidly last year and am underweight but I believe I lost the weight due to my constipation. I never wanted to eat because I knew it wouldn't come out lol I have gained 6 pounds since with no problems.

I have had blood taken and am not anemic or vitamin deficient.

I've had a stomach x-ray and all they could tell me was I was really, really backed up (no surprise with my constipation problems).

I just received insurance and my doctor is scheduling me for a colonoscopy

Which brings me to today; I just got blood tested for Celiac. I have been going on and off gluten for a month and a half now and am wondering if it will affect my results. In May I stopped eating gluten and all of my new symptoms I have listed above disappeared completely! When I got married I ate gluten my wedding day and honeymoon and it felt like someone had kicked me 100 times in my stomach. However the bloating (which is my main symptom) did not appear until five days after eating gluten so I was confused. Since then I have been yo-yo ing back and forth trying to see if gluten is the culprit.

Any comments would be much appreciated