My Symptoms, Your Opinion, Please

[wondering28]

Let me start by saying I don't think that I have Celiac Disease- I think that it is possible that I have Celiac Disease and I am exploring that possibility. I am just trying to find an answer. If you don't think this sounds like Celiac Disease, do you have any other ideas??? If you do think it sounds like celiac disease any suggestions on where to go from here??? Thanks in advance!

Here are my symptoms as I have identified them thus far as well as a bit of my med history:

• Straining for 90% of my bowel movements for as long as I can remember.
  
• Had a cavity at every dental appointment I've ever been to - current dentist has repeatedly remarked that he is bewildered by my enamel loss.
  
• Irregular periods since puberty.
  
• Bruised easily my whole life.
  
• Diagnosed with Hyperventilation Syndrome in High School.
  
• Experienced what I call "brain earthquakes/shaking" about 1-3 times a year since High School
  
• Diagnosed with Fibromyalgia in fall 1999 but symptoms pretty nearly disappeared by spring 2001.
  
• Diagnosed with PCOS in fall 2004 as part of infertility work up (eventually conceived naturally).
  
• Sudden onset of sharp pain in lower left abdomen June 2007 which was recurrent for over a year and has recently transitioned to 24/7 dull pain in that area.
  
• Tender to the touch in lower left abdomen.
  
• Impossible to tell if my waist is distended due to recent pregnancy.
  
• Post delivery vaginal bleeding that has been unceasing since birth of 2nd child by cesarean 5mths ago, with the exception of some relief during first two cycles of trial use of mini-pill. Pill stopped helping in the 3rd cycle. Now bleeding continuously.
  
• Recurrent bouts of what feels like food poisoning and consists mainly of gas & diarrhea. About 6-7 episodes in the past 3 mths. Previously would get diarrhea maybe 2 times a year. Can't find a food related pattern. Only that I have usually thoroughly exhausted myself within the 24hrs prior.
  
• Increase cases of gas between diarrhea episodes.
  
• Chronic fatigue largely unaffected by amount of sleep.
  
• Recent blood test revealed low potassium levels.
  
• Recent discovery of bulge inside vagina- strongly suspect Rectocele & maybe Enterocele.
  
• Recently started paying attention to stool. 2 days ago noticed soft & green following diarrhea episode (drank green Gatorade, though) and today multicolored (dark brown, yellow, & a streak of dark red) & hard and 1 piece floating. Not sure relevant or not.
  
• Tested negative for anemia despite bleeding.
  
• Primary Care Physican suspects IBS & has referred me to dietician (Aug. 20) & CT Scan "just in case" (Aug.8th).
  
• Appointment scheduled with Pelvic Medicine specialist (Aug. 7th) to confirm diagnosis of Rectocele & maybe Enterocele.
  

Family History of Intestinal Issues which I am aware of:

• Sister with IBS & Rectocele diagnosis. History of strainging w/BM.
  
• Mother had surgery for Rectocele & Cytocele. History of strainging w/BM.
  
• Second Cousin diagnosed with Crohn's Disease @ age 4.
  
• Great Aunt with serious bowel issues (had to wear bag- not sure of diagnosis).
  

Thanks for taking the time to read and comment!

[ShayFL]

I think you should be tested for it. Yes. Full Celiac blood panel.

[Ursa Major]

I think that even though there may be other possibilities, celiac disease is one of them. When they said you are not anemic, was your ferritin tested, or just your hemoglobin? When my ferritin was only 4 a few years ago (50 to 300 considered normal, about 105 optimal level), my hemoglobin was still considered low normal (it takes a while for that to go down when your ferritin is low). But I had lost ALL energy, being unable to even stand some days!

The bleeding could be caused by low vitamin K. Has that been tested?

Low potassium is a frequent problem with celiac disease.

The 'earthquakes/shaking' is a neurological issue, which can be caused by your B vitamins being low.

Of course, all of the above deficiencies could be caused by celiac disease.

You need to have that tender area in your abdomen investigated. Obviously, you need to deal with the possible Rectocele & maybe Enterocele, which can be caused by childbirth, and/or constant straining with stools, and a few other things.

And I suggest you get yourself tested for celiac disease. Don't try the gluten-free diet until you are done with celiac disease testing, as otherwise you are guaranteed negative results, even if you have it.

Then, after testing is done, try the gluten-free diet (even if the results are negative, because the testing isn't all that accurate.... the diet is the best test in the end).

[neesee]

My chronic lower left abdominal pain turned out to be diverticulitis. It always hurts. And then it got to be severe.

It's my fault it got so bad. I blamed it on the celiac. I was wrong.

My son is 28 and already has diverticulosos. So if you think you are too young. think again.

You probably should have a colonoscopy.

neesee

[wondering28]

Thanks for the great responses.

I hadn't thought of diverticulitis. I'll discuss it with my doctor, but I haven't had a fever, so I doubt that's it.

My doc said that since I wasn't seeing any blood in my stool she didn't want to do a colonoscopy at this point because it does carry risks.

I just rechecked my lab results. My iron was 52 and my Ferritin 22. Both on the low side of normal, but still normal.

They also tested my: WBC, RBC, HGB, HCT, MCV, MCH, MCHC, RDW, PLT Count, MPV, TSH Sensitive, Glucose, BUN, CREATININE, GFR, SODIUM, POTASSIUM, CHLORIDE, BICARBONATE, CALCIUM, & IBC.

The letter that came with the results said that "all labs look good except potassium level is low." Yet, when I checked online my Glucose level is technically low- but only by 1 point. The good news is they want to repeat the tests so maybe the comparison will help with clarifying that.

BTW I realized that I forgot to add that I've been nauseated almost unceasingly since my last diarrhea episode 5 days ago. Previously I would only be nauseated for the immediate 15-20hrs following the episode. Now it just doesn't go away and sometimes it's so bad that I just stop whatever I'm doing and focus on breathing slowly & deeply while waiting for it to lessen again. It's so tempting to just stick my finger down my throat and get it over with. But I won't.

Point is, whatever is wrong with me is clearly getting worse. I wish I knew what & why. It would be so much easier to handle.

Thanks again for your comments.

[neesee]

I had nausea, vomiting and diarrhea and a low grade fever with my diverticulitis. I also had a huge pocket of infection that showed on my cat scan.

neesee

[wondering28]

Well, my abdominal pain sent me to the E.R. yesterday. It was so bad yesterday when I went to the library and half way back to my car I knelt on the ground wondering if I'd be able to make it the rest of the 25ft to my car. So the doc said to go to E.R. They ended up doing more blood tests and a CT Scan and .... nothing. (well, my Creatinine was mildly elevated but that was very likely dehydration.) I now know a whole lot more about what I do NOT have (not: diverticulitis, colitis, tumors, or kidney stones), but nothing more about what I DO have. The E.R. visit did get me another urgent appointment with my primary for Friday, though (as opposed to September). I plan on asking for celiac testing at that appointment, but I was thinking... celiac wouldn't explain the kind of pain I'm having, would it?? Would celiac disease cause intermittent pain that can sometimes be enough to drop a person to their knees and also cause continuous dull pain throughout the entire left abdomen???

Thanks!

[CarlaB]

Please check out the Lyme Disease thread.

I have that hyperventilation ... it's due to a coinfection of babesia. I also get that same pain on my left side (spleen) which is also affected by babesia.

I had a LOT of GI issues, which is why I post on this website. Those have since cleared up with Lyme treatment.

Pretty much every single symptom is something I've seen on Lyme forums.

Yes, check for celiac, it's an easy test. It certainly can cause systemic symptoms.

Please read this thread, Lyme testing isn't nearly as simple. Open Original Shared Link

[wondering28]

Please check out the Lyme Disease thread.

I have that hyperventilation ... it's due to a coinfection of babesia. I also get that same pain on my left side (spleen) which is also affected by babesia.

I had a LOT of GI issues, which is why I post on this website. Those have since cleared up with Lyme treatment.

Pretty much every single symptom is something I've seen on Lyme forums.

Yes, check for celiac, it's an easy test. It certainly can cause systemic symptoms.

Please read this thread, Lyme testing isn't nearly as simple. Open Original Shared Link

I read a lot of the thread you linked above. Looking at your list I counted roughly 15 symptoms that I have, but it just seems a little bit of a stretch to me. I also looked at another site about Lyme disease and read about the rash many people get. I remember having a huge mysterious rash with a white center at some point in the past several years, but I think it was after high school so the hyperventilation syndrome and "brain quakes" would have been/started before that. So that would take down the symptoms to like 13. I appreciate you pointing out the possibility and I see why you suggested it, but right now it just doesn't *feel* right, ya know? Also, I spent the majority of my high school years in the high desert and I don't think they have the deer tick there. I did go to France after my freshman year, and Hawaii, China, Korea and New York in the months immediately after high school.... the hard thing is that I've been a spider/mosquito magnet my whole life so one more bite would probably have been completely dismissed. ....Also, I had the Fibromyalgia diagnosis in 1999 shortly after a trip to New York and the site I read said the aching joints would start within days of the rash which again would eliminate anything that happened in high school. So... the symptoms just don't add up, I think.

But thanks for taking the time to point out the possibility to me!

[CarlaB]

It doesn't sound like the site you read was very good ... probably a CDC or IDSA site. The IDSA just got in trouble for anti-trust violations with their Lyme treatment guidelines.

Anyway, I never had the rash at all. I've never been to an endemic area (until after diagnosis). I never had a deer tick. Other ticks carry the disease (and I've had many of those tick bites), but that is typically misrepresented. There is a huge political battle over the treatment for Lyme financed by the insurance companies .... 9 out of the 14 members of the IDSA who wrote the guidelines were paid by insurance companies .... Lyme treatment is very expensive .... insurance companies turn in Lyme doctors to the medical boards for investigation for not following the IDSA guidelines. That's the ultra-simplified version.

My aching joints didn't start for 30 years after the bite. For most of the time, I had few symptoms until another illness triggered the Lyme to be able to just take over my immune system. Then I went from maybe 5 symptoms to 45 and bedridden.

With that bullseye rash, I would bet money you have Lyme .... but I understand you researching more ... I've been there myself. It is entirely possible you already had it when you were bitten, but that you got new, stronger symptoms after another bite.

Check out these sites - lymenet (.org), www.canlyme.com, and www.ilads.org.

I hope you get to the bottom of your health issues soon.

[jerseyangel]

Several possibilities....since your symptoms seemed to take a jump after childbirth (a typical trigger for Celiac), I would suggest getting the blood test. Ask your doctor to run the Celiac Panel, it consists of these tests--

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

Don't stop eating gluten or go gluten-lite before testing, if you choose to go ahead with it. Doing that will skew the results.

Good luck

[Gluten Ninja]

Well, my abdominal pain sent me to the E.R. yesterday. It was so bad yesterday when I went to the library and half way back to my car I knelt on the ground wondering if I'd be able to make it the rest of the 25ft to my car. So the doc said to go to E.R. They ended up doing more blood tests and a CT Scan and .... nothing. (well, my Creatinine was mildly elevated but that was very likely dehydration.) I now know a whole lot more about what I do NOT have (not: diverticulitis, colitis, tumors, or kidney stones), but nothing more about what I DO have. The E.R. visit did get me another urgent appointment with my primary for Friday, though (as opposed to September). I plan on asking for celiac testing at that appointment, but I was thinking... celiac wouldn't explain the kind of pain I'm having, would it?? Would celiac disease cause intermittent pain that can sometimes be enough to drop a person to their knees and also cause continuous dull pain throughout the entire left abdomen???

Thanks!

I was just diagnosed with Celiac in May and pain in my left abdomen is what got me to the doctor in the first place. It started as intermittent, but in February it became constant. It was mainly centred under my left ribs (I don't mean under my rib cage - I mean the area below my last rib on the left) and sometimes radiated into my back, up into my chest, and down into my hip. I was diagnosed with kidney infection; when it didn't stop after many antibiotics, they started thinking kidney stone. I had a CT scan, which was negative. Finally in April, I had the blood test and my TTG antibodies were through the roof. Since going gluten free, I haven't had the pain. I haven't had the biopsy yet (the wait to see a specialist is a year), but the super high antibodies I had combined with very common nutritional deficiencies to Celiac pointing to intestinal damage and malsorption and improvement on the gluten-free diet is enough evidence for me at this point.

So long answer to your question: yes, left abdominal pain can be Celiac (and many other things!).

[wondering28]

Update:

Firstly, I just discovered that my great grandmother's sister had Lupus & her brother had Celiac. The brother's daughter has Celiac, and two of my cousins via that same great grandmother have just been dianosed with Celiac. There is also speculation that several of my recently deceased relatives on that side of the family also had undiagnosed Celiac. The really fun info was that my great grandmother's brother had several blood tests and even intestinal biopsies which came up false negative throughout his life until he was finally diagnosed IN HIS 80s!!!

Well, on the 7th I had my appointment with Women's Pelvic Medicine and they diagnosed me with a mild/moderate rectocele & (to my great surprise) cystocele. However, he does not believe that any of my symptoms beyond the difficulty defecating & immediate tangible prolapse signs, have any connection to these diagnosis. He prescribed me Estrace Cream to help "shore up" my thin vaginal walls and told me to schedule a follow up 7mths from now (farther from birth & after breastfeeding is done).

I also had another appt with my primary care physician (as an E.R. follow-up) and she admitted to being stumped. The end result of the appointment was:

• blood drawn to test for Celiac - Not sure *exactly* what was being checked, but I'll check when it comes back. She said it would take weeks to come back because they have to send it out.
  
• blood drawn to test my hormone levels (particularly estrodiol)
  
• urine taken to recheck my glucose & other levels
  
• referral to reproductive endocrinologist - for "hormonal related symtoms"
  
• referral to gynecologist - to discuss possibility of endometriosis (I'm highly skeptical this will amount to anything)
  
• referral to gastroenterologist - for consult to rule out other gastro causes
  
• referral to physical therapist - for general consult/ possible pulled muscle in back causing constant dull pain separate from recurrent sharp pain
  

So I'm waiting for the lab results and for the referrals to "go through" (I have an HMO). My husband calls my PCP's method "throwing spaghetti at a wall and hoping something sticks". LOL! Hey, I'm just glad someone is taking me seriously and really listening to me!

I will continue to keep Lyme in mind as a possibility. But for now I feel I need to explore these other possibilities. Especially given what you've said about the controversies.

Also, Wednesday August 6th, something amazing happened. I STOPPED BLEEDING!!! Thursday the 7th I thought I was in heaven! My constant dull pain in my left ab was gone for the first time in a month! My exhaustion was gone (though I'd had only 3hrs sleep). My nausea was gone. I only had one minor sharp pain episode all day. In short, I felt like my old normal self! I actually cried with joy that night. Friday was another good day, though I did have some intermittent nausea, dull & sharp pains, and short waves of exhaustion. Then Saturday I began feeling nausea immediately following breakfast. I also felt one dull menstrual cramp that morning. I could feel my energy leaving and the general malaise returning. That afternoon I saturated a pantyliner & 1/2 a tampon with blood. But then the bleeding stopped again. Sunday I had was back to constant pain, waves of nausea and exhaustion, and in the afternoon I had a scale 10 sharp pain attack that lasted 5 minutes and took a while to fade off forcing my to abruptly leave my grandmother's 70th surprise birthday party early and leaving me totally miserable and nauseated for the remainder of the night. Monday I was back to the usual malaise and pains. Same on Tuesday. I also returned to spotting briefly Tuesday afternoon. And here I am 2:30am and my baby has just drifted off so I will say good night.

Thanks to everyone who has cared enough to reply to my messages!