Thanks So Much For This Info!

[LadyMac]

I am so glad I found you folks! I've spent days reading posts and gathering information so I can tell my doctor what tests I need to have done...which doesn't do much for my stress level, as you all know quite well.

I've had digestive problems for years. I've eaten Imodium, belladonna and other band-aid meds to control diarrhea. I gained weight, felt bloated, ached everywhere and feared leaving my house until mid-day, when I could be sure I wouldn't have an 'accident' while loading birdseed or a heavy object into my shopping cart. How embarrassing!

So far they've sent me to a disease specialist who said 'you look great on paper'. I asked if I should just use that report for reading material for each visit to the bathroom. Sheeeeesh! I eliminated milk and that helped a bit for a while but the symptoms returned, despite no milk products. Two months ago, as I was leaving my neurologist's office, (I see him for arthritis) he suggested I may be gluten intolerant.

I eliminated gluten, felt better the very next day, and lost one pound a day for one week. I worried about the quick loss, upped my calorie intake and my loss has settled to between 10-15 pounds total. I almost feel 'normal'. But I still have bouts of diarrhea and bloating. Then I review everything I put in my mouth that day or the previous day and I look up each item. The 'do not eat' list continues to grow. From what I've read here, that is pretty typical in the learning curve.

I just got off the phone with my gp's nurse. I called to see if the last battery of tests included a test for gluten intolerance. She didn't know which test I was referring to and said she'd get back to me today. I'll refrain from the 'why should I have to tell the doc's office what to do' rant. I'll also refrain from the 'why do they make me feel like they need to verify I have a functioning brain before they listen' rant.

I'll just say Thank You! I have been fighting frustration and depression about this situation for quite some time. Reading your posts and noting the helpful information has lightened my load and helped me stay focused and positive. Now, if I could only do something about the sarcasm that fighting with doctors seems to bring on.....

Again...Thank you so very much!

LadyMac

[Lisa]

We are glad that we can be of some help. Hopefully, you will have a resolution to your problems soon.

[home-based-mom]

So far they've sent me to a disease specialist who said 'you look great on paper'. I asked if I should just use that report for reading material for each visit to the bathroom.

That's the best retort I've ever read!

Welcome to the forum.

[LadyMac]

Thanks for the welcome!

Glad to know I made you smile, home_based_mom...sometimes ya just have to find some humor in a situation. Keeps me sane...I think

The nurse finally called back and scheduled the proper blood tests for next week. She said to start eating gluten to keep the results clear. I'm going to eat everything I couldn't have for a while!

The bad news was finding out the biospy is done with a colonoscopy...Oh nooooooooooooooo...Just had one in December but I'll spare you the details.

I'm going to go think lasagna...much nicer thought...

Thanks again...for the welcome and the information

LadyMac

[ohsotired]

LadyMac,

If they are doing a biopsy to look for celiac disease, you need an endoscopy, not a colonoscopy.........

Just thought I'd throw that out there. They may be looking for things like Ulcerative Colitis or Chrons (with the colo), but why not request they do both at the same time? It only takes a few minutes more, you'll only have to have the anesthesia once, and you may well find the answers you need.

Good luck! Been there, so I know it's not easy.

[LadyMac]

Thanks. I'll bring that up next week, at my next appointment. I didn't get to see the doc when they took a blood sample today. I don't know that they are looking for Ulcerative Colitis or Chrons...They weren't even looking for gluten intolerance until I called and suggested the test (Thanks to this forum).

I've been back on gluten for one week. I think I'll continue the eat gluten...From what I've read here, one week may not be enough time to avoid gluten...Plus, I had been gluten free for two months or so. My reasoning is that, if this blood test is negative, perhaps one taken after a longer gluten-ingesting time period might show a different result. Does that make sense to anyone reading this? If it is negative, should I just tell them to go right to the biopsy?

So far I'm not having a drastic reaction but I can see and feel my upper stomach swelling and I've gained four pounds just this week...My guts are rumbling and I'm pretty sure I know where this is going. I've also read that people all react differently when reverting to eating gluten. I'm not Hoping to use my entire stash of baby wipes...but I won't be surprised if I do.

Again, thanks to all for your support and information. Priceless gifts...

LadyMac

If they are doing a biopsy to look for celiac disease, you need an endoscopy, not a colonoscopy.........

Just thought I'd throw that out there. They may be looking for things like Ulcerative Colitis or Chrons (with the colo), but why not request they do both at the same time? It only takes a few minutes more, you'll only have to have the anesthesia once, and you may well find the answers you need.

Good luck! Been there, so I know it's not easy.

[LadyMac]

And now...*drum roll*...I have thrush.

This is turning into a nightmare. In my previous post I mentioned that my gp sent me to a disease specialist this past year. One symptom was diarrhea. The other symptom was reoccurring thrush. I had it several times, usually after an antibiotic, and once after a dental appointment (I was in the dentist's office yesterday). I am allergic to antifungals...I get hives. The gp took a battery of tests, including an AIDS test, and sent me to the specialist. The specialist said I might have a milk allergy and sent me home with a suggestion for 'the next thrush treatment'. He also said I might have had a reaction to the novicain or what-ever-cain.

.

I relayed this to my dentist who scolded me for not letting him see my mouth.

My tongue is white white white. I left a message with his office and I'm waiting for a return call. I've done a search here for thrush and read the posts and suggestions. I have acidopohilus and I'll ask the dentist about it when I see him, I guess.

I also re-read the posts about blood tests and biopsies and how meaningless they can be. I'm trying to not get stressed out over how clueless the people I'm dealing with seem to be!

So, I'm going gluten free again.

Sorry if I keep posting...I'm trying to stay informed and focused and the only knowledgeable people I've seen have been Here. Any feedback is welcome.

LadyMac

[RiceGuy]

One product which is good for candida, thrush, etc is Open Original Shared Link. But also, you should avoid sugars, yeasts, vinegars, and fruits. Antibiotics tend to make full recovery more difficult for many, so I'd avoid those.

[LadyMac]

One product which is good for candida, thrush, etc is Open Original Shared Link. But also, you should avoid sugars, yeasts, vinegars, and fruits. Antibiotics tend to make full recovery more difficult for many, so I'd avoid those.

Thank you, RiceGuy! I looked for it locally today and couldn't find it. I'll probably order it online tonight. I checked the label on the acidopohilus and it has maltodex-something...malt. So, that's out.

I spoke to my dentist today and he called in the Exact Same Anitfungal that I reacted to last time. *sigh* I called my gp and went in for a tongue/throat swab, since the hospital lost the last one. The nurse listened to my rant and said...'Sounds like celiac disease to me'. She is the First person I've seen who has uttered the word! She also said she wouldn't take the antifunal if she were in my shoes. My tongue was indeed thickly coated and she took a swab. I'm not convinced it's not an allergy to whatever the dentist used to numb me. The white is distinctly on the side of my mouth where the work was done. We'll see when the results are in.

I came home to find mail from the nurse who took my blood Tuesday. A packet about Celiac Disease! At least someone in the medical world is listening!

Thanks again to all who have read or replied. I sympathize with the most recent posters who are frustrated by the medical people they've dealt with. It seems so Wrong that you have to stamp your feet and wave flags, flash cards and written research articles in order to get their attention. So far, I've had better luck with nurses than doctors...or dentists!

Reading this board helped me realize that the only person who can make a decision about what to put in my mouth...is ME! Thanks a million

[LadyMac]

One product which is good for candida, thrush, etc is Open Original Shared Link. But also, you should avoid sugars, yeasts, vinegars, and fruits. Antibiotics tend to make full recovery more difficult for many, so I'd avoid those.

Oh, and, RiceGuy....yep, yep about the antibiotics. Every time I've taken any for the past five years or so I've gotten thrush. Also thrush after two dental appointments. That was part of why they sent me to the 'disease specialist'.

Thanks again for your feedback.

[nora-n]

Karen Tripp has a good website about candida, with a good description of the diet, and she says you havve to use something antifungal as well. But if the problem is gluten this will not be the sulution since the small intestine is damaged form gluten and is the cause of the cndida in the first place.

But, some people think it may be the other way around, candida triggering celiac since some molecules on the dandida are identical to gluten. There is even an article in The Lancet about that. There is an article here about that too.

nora

[mftnchn]

Hi, and glad you found us.

Just a note hope not a discouraging one. 2 months gluten-free is very much enough to impact both your blood tests and biopsy and it might take weeks or months back on gluten to have positive. Then again, you could still be positive, but not so likely from the colon. Hope your doctor knows enough about celiac to know that!

I think you do have the beginnings of a solution with the gluten-free response you have had!

With the candida and your difficulty with treatment, you might consider following the SCD or a similar low carb approach after your testing is completed. Along with that (and part of SCD) some good probiotics to help rebalance your intestine, and perhaps some herbals to help.

There could be a connection with celiac and candida in several ways; one way might be damage to intestine reducing ability to make carb digesting enzymes, so that undigested carbs are getting to the lower intestine (should be absorbed by then) and feeding many bad organisms. In this case, you'll need to stop eating the kind of carbs that you can't break down. Another way might just be the damage and lower resistence. Also there can be other infections or conditions that impact the candida.

Hope this helps.

[mymagicalchild]

And now...*drum roll*...I have thrush....My tongue is white white white...So, I'm going gluten free again.

Sorry if I keep posting...I'm trying to stay informed and focused and the only knowledgeable people I've seen have been Here. Any feedback is welcome.

LadyMac

The info I've gathered puts a high correlation between gluten intolerance/celiac and candida. The thrush diagnosis would make me CONSIDER the possibility of a generalized candida issue throughout my body. Google "coconut oil and candida" and you'll find a wealth of valuable information.

We have an excellent Internist in our area who puts EVERY NEW PATIENT on an anti-candida regimen.

Rice Guy gave you the name of a product for candida containing 500 mg of caprylic acid (the key candida component) in 2 pills. I'm having good results with a generally available product called yeast-cleanse, which has 2160 mg caprylic acid in 6 pills.

Extra virgin coconut oil is the best source of caprylic acid. There's lots of info about it on this site too! Good Luck!

[LadyMac]

Wow. What an amazing amount of very helpful information you folks provided! Thank you. I spent all morning reading and clicking and printing. Your information, compared to the information the nurses gave me, makes theirs read like Dick and Jane Have A Belly Ache. Part of the nurses' web site url contained the words, 'patient primer'. They obviously didn't stray from the links provided by the office...which are probably sponsored by some drug company...Oh, that sounds so cynical I think cynicism should perhaps go on the symptom list....

Anyway, until the swab results come in...I'm gluten free, sugar free, carb free...and anything else on the gluten/yeast/carb lists. If this is thrush, I'll take RiceGuy's suggestion, and also add coconut oil to my diet. I'll also share (with url and names omitted) the informative responses here with my gp's office...in case they haven't heard of the connection between Celiac and Candida. I also highlighted all my symptoms on 'their' celiac symptoms list. They should be able to look in my records and find 8 of the 11 symptoms that I have been in to see them about time and time again in the past five or more years.

I got out my blood test results and researched the list of findings that the 'specialist' interpreted. Although none of the counts were over the 'range', some levels were on the high end...white blood count, albumin and others that indicate malabsorbtion. Plus, his suggestion of lactose intolerance because my 'system was irritated might have been a clue'...add the re-occurring thrush...

The gp's CNP and the 'specialist' were both very focused on the AIDS/HIV test...which was negative...But, thrush in AIDS patients is a symptom that occurs in the very advanced stages of the disease...When I came home I looked in the mirror I didn't look at all like an advance stage AIDS sufferer...and I've never shown one other symptom...It just irritates me that some professionals are so equipped with blinders that they see what they expect to see...which blinds them to what stands in front of them...I think that's called a closed mind...

I'll post the results of the swab. Today my tongue still looks like it has been purposely divided in half with white chalk on the right side...that dental work side. He eihter screwed up my PH or I'm reacting to his 'numb' stuff.

Again, thank you, posters. Both for the information and a place to vent a bit with folks who understand this journey.

LadyMac

Thanks again, posters.

[LadyMac]

Both test results arrived in the mail today.

Oh, surprise....

lgA and lgG are both low on the <20 scale.

lgG 2

lgA 4

with <20 showing negative.

Knowing this means nothing after only one week of eating gluten before the test...still doesn't make me a happy camper. Mostly because the doc's office Should Have Known that and perhaps should have had me wait.

Yeast culture...

'no growth of yeast' with the words 'thus far' in bold print.

Maybe my tongue is clearing up (only white on the back of my tongue today) due to eating nothing but eggs, veggies, plain unsweetened yogurt and ice cubes for the last two days. Or maybe it's clearing up because I had an allergic reaction from my dentist visit. This is the second time it has happened after dental work...

So, still gluten free, still grateful for your support and info.

Have a great week-end!

LadyMac

[nora-n]

In case of low IgA, the usual celiac tests are useless...the IgG versions should be useless too in case of low IgG, I would think.

I have read that one can get low IgG from long-standing Lyme disease.

There is still IgM.

nora

[mymagicalchild]

Your information, compared to the information the nurses gave me, makes theirs read like Dick and Jane Have A Belly Ache.......

When I came home I looked in the mirror I didn't look at all like an advance stage AIDS sufferer.....

thanks again, posters.

LadyMac, you've still got your sense of humor. And that's a real PLUS!

The pH might be something to pursue. An acid condition is a no-no and all cooked foods are acid-creating. There's a local group called Gerson Institute that claims to be able to cure anything with massive servings of freshly juiced organic veggies. They use a hospital in Mexico for their program with specially-trained doctors in attendance.

That diet would definitely return your body to slightly alkaline. I believe die-off of candida or other parasites is also acid-producing, so it's a competition between forces: your fresh diet and your body detoxifying.

I'm suspicious that lack of essential minerals may be at the root of an acid condition. You might get some useful info by googling the "lemonade diet" and reading the concepts behind it. I've been on it 3 times.

I really like to fry gluten-free bread in coconut oil and put the dark, natural maple syrup used in the lemonade diet on top with fresh, chopped fruit. Yummy. I also drink organic carrot juice mixed with goat-milk whey powder every day.

I've got one rule that I do believe is a universal truth: THE PROOF IS IN THE POO. If it's not healthy, your gut needs serious attention!

Good luck, Lady Mac, and keep writing those funny tidbits!

[LadyMac]

Here's my latest update...

Went to my gp (armed with printed material) and as she proceeded with the scheduled general physical, I told her I wanted to speak to her when she completed the exam. I was co-operating fine 'til she asked me if I was sexually active. I am married and she is also my husband's gp. So, I told her it depended if she asked me or my husband. She sat down and told me I sounded angry. Two points for being perceptive!

At that point I sort of blasted the office for the long-term band-aid treatment, the lack of diagnostic skills one pays for (or the insurance companies pay for), the years of visits for the same issues time and time again, the shrugging of shoulders and writing prescriptions or sending me to clueless specialists who obviously have no clue, the lack of follow-up, lack of proper tests, and the possible, non-reversible consequences my body has and will endure.

She was very patient and just let me vent...

Then she said she was very, very sorry...her brother went 12 years undiagnosed until his research brought him to the Celiac conclusion. She told me I had done an amazing job of research and my persistence was commendable. Wow. Put a gold star on my forehead (and all of yours here!).

Then she said she wished I had some recent blood work results. I pulled out the blood work I had done, via Their office, at My request, three months ago and asked if they would 'do'. She looked rather sheepish and said yes. I told her all the pencil marks were mine as I figured out how close I was inside or outside the ranges.

We discussed Celiac symptoms, diet , etc. and she asked if I wanted to take more tests. Not if they meant eating gluten, I don't! I told her I don't need a formal diagnosis with a doc's initials to feel better...I need to get everyone on the same page for once.

Then I came home and wrote to my two boys and their families. They live on the other side of the country from me. I explained about my 'quest' and gave them the url for this site. Last night my oldest son called. He spent the day reading a lot of information here and he was just dumb-struck by how many symptoms he's had (and been treated for) for quite some time. He is going to get tested. In all of his research on IBS and other digestive problems, he has never come across the gluten intolerance issue. I'm sure, once I'm done being so darned aggravated, I'll share his relief.

*waving to Dave, if he's here*

You folks have been an amazing source of information and support. You've made this wretched journey more tolerable and helped me believe the light at the end of the tunnel isn't just another train. Thank you so very much!

Now...on to the dentist who just 'couldn't believe' it wasn't thrush...........

LadyMac

[mftnchn]

Kudos to you! A wake up call to a doc and perhaps a breakthrough of help for others in your family.

[G-man]

Shout out to my Mom,

I spent like twey minutes typing up a beautiful 1st posting and my computer went nuts and I lost it LOL

I just wanted to at least say hello, and let you know I am taking all this in. I feel very overwhelmed right now. I will post more on a intro to the board! Thanks for getting me here, it's like free therapy!

Love you and talk to ya soon!

Your #1

[nora-n]

Hi G-man, welcome here.

Here where I am most celiacs diagned are relatives of celiacs.

Please keep in mind that if you want an official diagnosis you need to consume alot of gluten, like 0,3 grams per kg. My doctor did not know that.

nora

[crunchy-mama]

What a journey! It sounds like you are finally on the right track! Kudos to you for being so assertive and thank goodness your dr. finally listened!

[LadyMac]

The weirdness continues...

Friday...mail from my Doc saying the yeast test positive and to ask if I was still taking Nystatin...After counting to a zillion or so I called their office and told them...No one gave me Nystatin, no one prescribed Nystatin, I don't have any Nystatin and I am allergic to it! For crying out loud...They gave me Fluconazole and I stare at it while drinking my acidopholus (sp) tea.

I called my dentist and told him the doc had over-ridden the negative to a positive. I saw him today for this ongoing dental work nightmare. He spent all week-end researching how dental work could trigger this response. The thrush was so very distinctly on one side of my tongue instead of the usual equal coating...both times that it occurred.

Then he dropped a small bomb...I have extensive root canal work done 20 or so years ago and the porcelain crowns were cracking...(thus, the recent dental work). He asked if my previous dentist, now long retired, has used Sargenti Paste, or, formaldehyde. He thinks this might be leaking out when he removes the crowns...since it only happens when he does that. I had no thrush during cleaning, etc. Just during crown work. And I have more crown work to go....

Called my retired Dentist. Yep....Sargenti Past...Then he let go with several disclaimers about it's safety and claims that the new dentist is fishing...yadda yadda.

I'm getting a blood test for it soon, to see if the gas that has been steadily released into my system is present. And then...I don't know what...

I do know I'm too tired too grab yet another professional by the throat and hold them against a wall to get clear answers. Thank goodness I see my arthritis Doc Thursday...he's the only sane, up to date professional I've talked to in six months.

Hello to my #1! I know it is overwhelming...but you're in the right place to help keep you informed and with like company...that's a giant step in the right direction. I know you've been reading but don't forget nora/n's advice to eat gluten before the tests and make sure they know to take all the right tests!

Your brother called this week-end...said he had nasty white stuff on his tongue....That would be.....thrush!

Thanks to all the posters...and for the pat on the back from crunchy_mama, mftnchn and others...There's a fine line between being assertive and being a b___h...I try so very hard to not step over that line...

Thanks again everyone...let me know if you've had any weird teeth issues

[G-man]

Mom,

funny to think, but I am not very good at listening to my body! I ate a ton of gluten loaded noodles last night and waited for the fireworks. Now I have been sick... so these results may not be typical. I had cramps and sharp pains in my gut within 20-30 minutes! but no explosive DH (Whew). I did have trouble sleeping and encountered bowel problems in the AM, which has lasted most of the day. I also noticed that I have a overly sore neck and back today even though I have not been active due to my cold? OK... enough of the self testing crap!

On the thrush issue? a white tongue is not normal? I brush my tongue all the time when brushing my teeth, but I still have a kinda white chalky tongue most of the time!

I just thought I was weird...lucky enough, now I have something to blame most of my oddities on! Ha

Here are some of my favs. I....

-bruise easily

-have terrible bouts with cancer sores

-IBS

-allergic to milk as child (deathly)

-joint issues (many) but currently tendinitus in shoulder

-headaches

-stomach problems??

-terrible heartburn (2 pepcid AC's per day)

-sleep issues (nothing 2 tylenol PM per night can't fix)

-distended and bloated feeling

-sick more and more

Hey.. did you happen to search this forum for PPD coverter or tuberculosis? kinda spooky!

how about childhood growing pains... oh I love that one!!!

why do so many doctors tell me I have extra bones or spurs everywhere they look?

I like this one too.... did you break that before? I dunno you tell me! your the one that read the x-ray three months ago!!

I better go I am getting steamed.....

P.S. Lots of more weird stuff comming!!!

Bye for now #1 out!