Strongly Suspecting Celiac. Does This Symptom Rule It Out?

[sosickofbeingsick]

Although I have dealt with chronic constipation for the past 6-7+ years, and extreme bloating intermittently for the past 2+, lately my increasing array of symptoms have become practically unbearable and unliveable.

Mid April I became extremely constipated while on vacation. While there I ate a purely pasta/wheat diet with occasional fruit (terrible, terrible food available). When I returned, I was still extremely constipated, bloated, having abdominal pain and very uncomfortable. I had to use medication to fix my constipation for the first time.Little did I know, everything would just continue to get worse...

I am trying to make a long story short here, so basically my symptoms are as follows:

-fatiguethat has been getting worse and worse. This seems to have been happening since the beginning of April before the trip. I can't exactly pinpoint since while in university I wasn't getting that much sleep, but at least for a year or more I have noticed decreased energy. When I first noted decreased energy 1 year ago I had iron, vitamin b12, tsh, hgb, etc. checked. All were normal. Fatigue is at the point now I need 12+ hours of sleep... 8 or 9 hours feels like 2 or 3. All I do is work and sleep. If I had sick days available I would be missing work but since I don't I am dragging myself there even though I feel miserable.

-constipation for past 6-7+ years, as discussed above. Worse in past 2

-extreme abdominal bloating/gas

-abdominal pain/discomfort. This has been steadily increasing since mid May when I went for my first appointment. I remember him asking re: pain at that time, and it was only occasional, and not very bothersome. It has been getting more frequent and more bothersome since then. It is now at the point that it is daily, and interfering with work/life. It seems to be worst and most often following eating wheat/gluten. I can almost time the pain starting now following eating wheat...

-frequent headaches- I have had frequent headaches for years. They are not necessarily more frequent now. They happen probably 4+ times per week

-loss of appetite, nausea . These are getting progressively worse as time goes on. I feel like I can barely handle eating anything. I have vomited in my mouth multiple times from the nausea, and actually vomited 2 times from it. I seem to feel best when I eat nothing or very little so while working I try not to eat much as not to aggravate my symptoms even more.. this coincides well with my loss of appetite and nausea...

- I have fainted once since these symptoms began..

-brain fog.. It feels like my head is in a fog, hard to concentrate, hard to think straight. I had a somewhat similar feeling to this 1 year ago where I was experiencing brain fog, memory loss, extreme difficulty focusing, racing heart (up to 130-140), shaking hands. This was diagnosed as anxiety although I had been convinced it was a blood deficiency of some type, and the anxiety was being caused by my stress over the symptoms. However,all my blood work was normal and when I began taking xanax to treat this issue, it seemed everything was better. I still felt some anxiety but was able to function. Recently my brain fog does not seem accompanied by any anxiety, and seems to happen even when I am home on a day off just laying around watching TV.

Other symptoms that aren't necessarily very bothersome but may be related:

-weight lossI have lost 12-14 lbs since last year. I am not sure if this is due to moving around more, or due to these symptoms. This has brought me into an underweight bmi category. I am not unhappy with this weight as I had been wanting to reduce the size of my tummy. However, now I am realizing/thinking the size of my tummy isn't really related to my weight but to gluten..

-easy bruising. Again, not sure if this is completely outside of the norm, but it seems I very often have bruises that I have no idea where they came from. They aren't ungodly black and blue or anything, but seem to be more frequent than normal especially when not accompanied by injury.

-pallor/very pale appearance. Relatives have commented on this for awhile (a number of years), but I now notice it myself, worse than previously. Depends on day a bit as well.

-cracks in corners of mouth, cankers (again, not sure how often people usually get this, seems I do a 2-5x a month for the dry cracked lips, cracks in the corner of mouth, and cankers maybe 1-3x a month)

-tachycardia My heart rate is consistently 100 or more. This has been present for over a year, possibly/probably more but I was just unaware of it. I have had ECG's, and an echocardiogram, which was fine.

The symptom that has lately been making me reconsider if it is celiac disease or not is I am having quite a large amount of mucus present. Both with stool, and sometimes passing only mucus. The first time I can recall passing only mucus was near the beginning of May, end of April. I think I have had mucus present in my stool for at least 6 months, but I can't recall if it was longer than that or not. It seems to be wrapped around and into my stool (hard constipated stools that always seem to separate and you can see stringy mucus between/around).

From what i have read, mucus can be caused by inflammation in the intestines, so by either IBS, crohn's, ulcerative colitis most commonly, or celiac. Many sites do not mention celiac as a cause of mucus, but some do...

I went to the doctor mid-May, he ran blood tests and other tests including h pylori, TSH, CBC, TTG and total IGA. Everything was normal, TTG was negative. At that point I thought celiac was ruled out until I talked to some people and from that did more research. The doctor told me to take sennokot twice a day, and increase fibre and water (which I already eat lots of fibre and drink lots of water... but I had been steadily increasing water intake as this was occuring. Made no difference). He felt the issues were due to stress from my upcoming exam although I was feeling no stress and the symptoms started to become worst when I was the least stressed probably ever in my life (graduated university, on celebratory trip). This was not my usual doctor, so when the issues continued and got worse and more symptoms developed I quickly made an appointment with my usual doctor. This took 3 weeks to get in. When I went to him, he felt it was inflammatory bowel disease or IBS. He insisted it is impossible to have celiac disease if TTG is negative. I tried to tell him about Canadian Celiac association guidelines/statement on this but he would not listen. He ordered a barium enema and abdominal ultrasound. Still waiting for these.

He must have done some reading or changed his mind or something however, as he ended up referring me to a GI a few days later. This was around the start of July. The GI turned out to be on vacation for 2 weeks. When he got back I called his office to get on the cancellation list. Turns out there is none. He reviews the referrals himself and makes the appointments from there. He has been back for a week and 2 days and no word yet on my appointment... I am becoming extremely discouraged. I feel terrible pretty much all the time.

Also a recent development in the past few weeks is following eating wheat (grilled cheese sandwich, pasta, etc), following the extreme bloating and pain I keep having frequent urges to defecate. The urge is not uncontrollable, but would be uncomfortable to wait if a bathroom was not nearby. The first few times I usually pass some stool (moderate-small amount), and as the amount of bathroom visits increase, the amount of stool decreases and at times it is only mucus. Other days following the wheat it is only the frequent urges and mucus occurring, or, the other variation, or frequent urges and just constipation and inability to pass anything.

Sorry this is longer than I intended. Just view the bolded portions if you don't want to read the long version!

[cahill]

There can be many reason for mucus in your stool. Intolerance to dairy or sugar or an inflammation come to mind . Also the reasons you mentioned can be present in addition to celiac.

Mucus in your stool does not disqualify you from celiac , sorry

Welcome to the forums

[IrishHeart]

I was going to say something quite similar to Chill's comments, so I will just say..."yes, what she said!"

I had virtually all the symptoms you describe.

Blood work can be neg and you can still have celiac. (I did)

Mucus can be present for many reasons, including celiac.

Other causes of mucus in stool are:

Ulcerative colitis

Crohn's disease

Diverticulitis

Sucrose Intolerance for example, can cause gas, bloating, mucus in stool from sugar--which could be secondary in celiac.

(Recognizing Celiac Disease, C. Libonati)

[GFreeMO]

I have the mucus every time I get glutened for at least a week. It's normal for us.

It may not be mucus, it is probably fat and or undigested food.

Do a search on here for passing mucus or mucus discharge or something to that effect. It's very common for celiacs to have this after all celiac destroys your mucus layer.

[GFreeMO]

Check out this thread. There are several more just like it.

[nvsmom]

A large number of untreated celiacs are lactose intolerant because the lactase our bodies need to digest milk's lactose is created in the duodenum where the intestinal damage has occurred so we can't make it. Mucusy stools could indicate a problem with lactose. While you are pursuing celiac testing (and eating gluten) you might want to consider cutting dairy way back, or out completely, in order to alleviate some of your suffering.

Many celiacs also have a problem with soy, corn, and nightshadse (root vegetables). You could consider cutting back on those.

When you see the doctor, you might want to request the EMA test. That one is specific to celiac and if it's positive, many doctors don't even bother with and endoscopy. Mine didn't.

Vitamin tests could help too. Somewhere around 30% of celiacs have false negative tests, and appear simply gluten intolerant, but they will not have the vitamin deficienies (from a damaged intestine) that a celiac would have. Ask for tests in B12, D, K, calcium, iron and folate.

Hang in there. You only have a while longer to eat gluten before you can go gluten-free for life and hopefully see improvements (your symptoms are very common to celiacs!). If the GI doesn't pan out, and you hit a dead end in terms of medical care, I would go gluten-free for a few months to see if it helps (I bet it will) and declare yourself celiac.

Best wishes!

[sosickofbeingsick]

Thank you very much for your replies and welcome I just hope the doctor doesn't think it rules it out... I want an upper endoscopy, and if he wants to do a colonoscopy to rule out other things I am fine with that.

I think you guys may be right about the link with lactose, as the hugest bloating I have had to my recollection was with a grilled cheese sandwich..

If I don't hear from the GI by friday, I am going to order some enterolab testing as well.

[cahill]

Thank you very much for your replies and welcome I just hope the doctor doesn't think it rules it out... I want an upper endoscopy, and if he wants to do a colonoscopy to rule out other things I am fine with that.

I think you guys may be right about the link with lactose, as the hugest bloating I have had to my recollection was with a grilled cheese sandwich..

If I don't hear from the GI by friday, I am going to order some enterolab testing as well.

Get your testing done before going gluten free but when it is all said and done

Please remember you do NOT need your doc's permission to go gluten free.

[sosickofbeingsick]

a1956chill, I plan to try gluten free regardless of my results. In fact, I plan as soon as I get my scope(s), I will start it that day! I just hope my doctor will do a scope and biopsy...

I found out today they had NEVER RECEIVED MY REFERRAL!!! When the office sent it, they sent it by mail instead of fax for some reason, and the GI office never got it!!!! I am SO annoyed. I have been waiting for almost 2 full weeks since he's been back, and not to mention the almost 2 full weeks while he was on vacation! I am so sick of it. UGH. I hope now that they put a little update on my referral and faxed it, he might take it seriously and get me in soon....

[icm]

Did the GI conduct the DGP gliadin peptide blood test?

[jerseyangel]

Sosickofbeingsick, I had every one of your symptoms before being diagnosed. Actually had to quit my job between the fatigue and fainting.

The mucus issue wouldn't by itself rule out Celiac. I hope you can get into the GI soon . Best of luck and keep us posted.

[sosickofbeingsick]

icm, the GI didn't do anything yet. I haven't seen him. The regular doctor didn't do that test. It is not an option on the requisition form so I don't know if they don't do it here or what.

jerseyangel, thank you for letting me know that, it makes me feel more validated that I could be on the right track here! I am so sorry you had to quit your job, that is terrible. Thank you, I will keep yas posted!

[sosickofbeingsick]

Felt awful Saturday, ended up having to miss work for the first time... I don't have really any sick days so this is a problem to be feeling so s$#&ty to have to miss work. I have been having a newer symptom, tingling ticklish feeling in my hands at times. I went and seen a doctor, he gave me an "urgent" consult to a surgeon who does a lot of upper endoscopies. He thinks I will be able to more quickly get in to see him.

He thinks it is not celiac, and IBS though... he agrees we need to do an endoscopy to rule out celiac though.

[Roda]

icm, the GI didn't do anything yet. I haven't seen him. The regular doctor didn't do that test. It is not an option on the requisition form so I don't know if they don't do it here or what.

The lab order requisition form doesn't have to have every test listed on it to choose from. There should be a place that the doctor can hand write any particular tests that are not listed.

[sosickofbeingsick]

Roda, thank you, I realized that actually, and asked him to order the other test, but I said EMA, not DGP. doh! Is EMA also good?

He wants me to eat as much gluten as I possibly can for 10 days and then do my blood work, which includes a repeat ttg, the EMA, vitamin b12, iron, ferritin, etc. (others he wanted checked again like tsh, cbc, electrolytes, etc, etc. There are TONS checked off, lol). Four days in of gluten heavy and I am EXTREMELY bloated. Usually there is some point in the day where the bloating is not as intense, but over these past 4 days it has been almost constant. My constipation is also worse, requiring multiple doses of medications, including 1 dose of PEG, 60 ml of lactulose .. nothing, then 1 dose of PEG this morning, and 2 doses this evening, and finally have results. I am really feeling quite sure it is celiac at this point... if I do have it, I hope the blood work will come back positive this time, so I start to get more support from doctors!

I talked to the surgeon's office today and the receptionist said she will be getting back to me shortly with the date for my appointment. I am calling back tomorrow to ensure she has located my referral form, as she had trouble finding it today (although she recalled reading it).

[sosickofbeingsick]

Forgot to mention, I also came extremely close to passing out again at work yesterday. The only reason I didn't was because I got sitting down in time. This is very frustrating trying to work and having things like this occur, being in pain/discomfort, having your belly feel like it's bursting it's so bloated, ETC. At least my extreme fatigue has been pretty good for the past 5 or 6 days!

[sosickofbeingsick]

So I did my blood work last thursday and I have some results (the EMA and Ttg are not back yet...).

Everything checked was normal except my iron. Which was (to my extreme surprise) high! It was only one point above normal, but still, this was extremely surprising to me, as I am a vegetarian and lately with how I have been feeling I have been barely eating much, and not watching my iron intake at all. I assumed it would be either low due to malabsorption or in the low range of normal. But high?? Symptoms of high iron apparently are similar to low iron: fatigue, weakness, hair loss, weight loss.. which I have had all of. Also, pain in the liver area, which I have had (central epigastric area, not off to the right hand side though...) It made me question hemochromatosis, if my iron is high when my intake is low, maybe it would be crazy high if my intake was higher?

I am frankly kind of baffled, and very very discouraged. I was hoping my iron or vitamin b12 would come back very low so I could get an injection and at least deal with some of these symptoms.

I found out my initial referral with the GI doctor came back with an appointment for mid september. The other referral "urgent"- came back with an appointment for mid october!

I am still waiting for my other results, but now I feel confused whether it is celiac or not, if my iron and vitamin b12 are not low... I don't know that all my blood work would be so good, but yet my symptoms be so strong?