Frustratedwith Dr

[wschmucks]

Hi Everyone,

A few weeks ago I was able to go see a specailist at the Stanford Celiac Clinic. I booked the appointment about six weeks in advance, drove and hour to get there and was very excited to meet with someone who would be able to lead me in the right direction and give me a game plan to getting better.

He did review my endoscopy slides and confirm the diagnosis as Celiac, but other than that he didnt do or say very much. He even said "you know to not have soy sauce right?". He just said ok, stay gluten free come back in a year. My primary symptom was/ is constipation and he said, "yea well the constipation probably isnt related and might get worse once you heal".....I find that VERY hard to beleive. I asked him then what he would advise me to do/ see then about the constipation becuase thats why i was there in the first place..."Excercise, fluids and fiber".....I am a 24 year old vegitarian who was a professional runner (still work out 5 times a week). Clearly its not a problem with my lifestyle-- SO frustrating.

I guess i just dont understand how Drs dont know this disease enough to help us correctly. I am at the Stanford Celiac Clinic and the Dr's assistant didnt even know that constipation could happen with a Celiac!

Am I totally crazy?? It makes perfect sense to me that if your intestines are not absorbing nutrients...that the food would not be digested completely therefore making it difficult to have a BM.

I guess I have 2 questions: should I beleive that my constipation is unrelated to my Celiac adn therefore go to a Dr to figure out whats causing it? And are you guys as frustrated with these Dr's who are supose to be the best and really have no insight?

[Lisa]

According to what I understand, we absorb 70% of our fluids in our small intestines. Many times excess thirst is a symptom of undiagnosed Celiac or early on the diet.

Perhaps that contributed, in part, to your constipation and once healed, it will be "relieved".

[tom]

My worst Dr's appt EVER was at Stanford, w/ Dr. Gray, an alleged celiac expert and at the time (maybe still) the head of their GI dept.

Makes my blood boil just thinking of this jackass. SO frustrating & useless - seemed he was just looking for a possible test subject more than listening & attempting to <gasp> actually help.

I'm not sure I got a chance to finish even one full sentence, when talking symptoms.

BTW, I found taking magnesium helped w/ C, but you've probably already heard that.

How can what they said make sense? "Not related, but gets worse while healing"??? Don't changes while healing = somehow related?

I've never heard that line about healing making C worse.

Hope you find some answers soon.

[rinne]

I guess I have 2 questions: should I beleive that my constipation is unrelated to my Celiac adn therefore go to a Dr to figure out whats causing it? And are you guys as frustrated with these Dr's who are supose to be the best and really have no insight?

First question:

As someone who has had a lifetime of C I would suggest the doctor is an idiot. I know most people have D and honestly at times I wish that was my problem instead. I would say it is related.

My experience is that if eat something that my body doesn't like it just stops working, at one point I was C for a week and that was with taking way too many laxatives, I felt dead from my solar plexus to the top of my thighs.

The bad news for me was that it did not go away on a gluten, dairy, nightshade free diet and that is after two and some years of being very strict. I am at home, do all my own cooking, no processed foods, eat fiber.... I started a modified Specific Carbohydrate Diet in December and the first thing that happened was no more C. That, more than anything, convinced me I was on the right track.

Second question:

Totally!

[rinne]

According to what I understand, we absorb 70% of our fluids in our small intestines. Many times excess thirst is a symptom of undiagnosed Celiac or early on the diet.

Perhaps that contributed, in part, to your constipation and once healed, it will be "relieved".

That is very interesting, I was a great water drinker for years and at one point wondered if I might be diabetic. Thanks.

[tom]

Oops double/triple post?

[wschmucks]

Yes, the appointment was with Dr Gary Grey. Thanks for responding guys. Some times its just nice to know that you arent crazy and that even if it doesnt change the situation-- you know you arent crazy and that someone else gets it.

[Welda Johnson]

Hi,

Oh my gosh! You must be inside my head, reading my mind. My 18 year old granddaughter has been in and out of the hospital for the past couple of months, with diarrhea, anemia, stomach pain, nausea, etc. rather than constipation, and I kept trying to find out if she had Celiac, since I have it, my sister and cousin have it, and my youngest grandson has had it. Doctors didn't pick the ball up even when my son mentioned that we have Celiac in the family. This was in San Diego County, but I've found that very few doctors know much at all about Celiac. I've been with the same physician since 1965 and I always end up telling HIM about this condition. Doctors finally decided she has ulcerative colitis, so she's following their instructions.

Like you, my symptoms included constipation, and once I got on the Celiac diet, it subsided. However, I had to switch to natural foods, turn away from canned and processed foods, and read labels intensively, which I still do. Drinking lots of water always helps, of course, but I also eat a fresh pineapple almost every morning, and eat frozen orange juice by the spoonful, as well as indulging in fruits of all kinds. Even when eating raw green vegetables I have a problem with digestion, as well as with legumes and proteins, and must make sure to drink a lot of water afterward.

I have to chuckle at your question about what we think of the expertise of doctors, since I spent so much time and money going to doctors, trying to discover what was causing my health problems, before I finally just dedicated myself to learning what was going on, without counting on doctors to give me the answers. I highly respect doctors, in that they often have answers that we are not aware of, and they spend all their time and money going to school so that they can help us, but, unfortunately, Celiac just wasn't included in their lesson plans. Only by having Celiac, apparently, can you actually learn what it is all about, then, hopefully, share that knowledge with others.

Hope you find your way on this path. Our bodies are so faithful to help us learn what is going on. Welda

[Lori T.]

Hi Everyone,

A few weeks ago I was able to go see a specailist at the Stanford Celiac Clinic. I booked the appointment about six weeks in advance, drove and hour to get there and was very excited to meet with someone who would be able to lead me in the right direction and give me a game plan to getting better.

He did review my endoscopy slides and confirm the diagnosis as Celiac, but other than that he didnt do or say very much. He even said "you know to not have soy sauce right?". He just said ok, stay gluten free come back in a year. My primary symptom was/ is constipation and he said, "yea well the constipation probably isnt related and might get worse once you heal".....I find that VERY hard to beleive. I asked him then what he would advise me to do/ see then about the constipation becuase thats why i was there in the first place..."Excercise, fluids and fiber".....I am a 24 year old vegitarian who was a professional runner (still work out 5 times a week). Clearly its not a problem with my lifestyle-- SO frustrating.

I guess i just dont understand how Drs dont know this disease enough to help us correctly. I am at the Stanford Celiac Clinic and the Dr's assistant didnt even know that constipation could happen with a Celiac!

Am I totally crazy?? It makes perfect sense to me that if your intestines are not absorbing nutrients...that the food would not be digested completely therefore making it difficult to have a BM.

I guess I have 2 questions: should I beleive that my constipation is unrelated to my Celiac adn therefore go to a Dr to figure out whats causing it? And are you guys as frustrated with these Dr's who are supose to be the best and really have no insight?

Wish I could say my experience was any better, BUTTTT!! Had a nutritionist who was supposed to be the best as well as a GI with the same accreditations who both blew it. Both said they did not know what was up with me, but they were stumped. The nutritionist was telling me to up my fiber, EAT MORE WHEAT BREAD. She was killing me. Found another specialist and after what totaled 5 endoscopies, hers was the only one to come back with anything. Theirs were all done incompletely. When I confronted them with this they said"Good. Now all you do is avoid gluten and life is normal again". Never told me what to find it in or apologized for the lack of their knowledge. Got rid of them fast. I had the C and D in conjunction with one another for years. Would eat a glutenous meal and have D for days. Then because I was resting my stomach from what I thought was just overeating, I would eat plain rice or potatoes or cheese. Bound me up something awful for days. Then back to the D. Now that I have a good GI doctor and an allergist to help me with what I found was a list of other offenders of the C and D as well and the gluten-free diet, I am much better with it. Find that if I avoid alot of the carb filled gluten-free prepackaged stuff, I do much better still. That stuff can plug an elephant!! More veggies and fruit and water instead of the juices and mixes. Good luck to you.

[Fiddle-Faddle]

That is very interesting, I was a great water drinker for years and at one point wondered if I might be diabetic. Thanks.

Me, too--never even dreamed it could be related to anything else until the major thirst disappeared when I went off gluten. The interesting thing was, my blood sugar was going higher and higher, to borderline pre-diabetic levels--until I went off gluten. After going off gluten, I was still eating plenty of carbs (rice , potatoes, & Fritos), and loads of chocolate--and my blood sugar went back to normal. Hmmmmm.....

[caek-is-a-lie]

Boy I hear ya. The Stanford Sleep Disorders Clinic wasn't much better.

[caek-is-a-lie]

Doctors didn't pick the ball up even when my son mentioned that we have Celiac in the family.

Yeah, what is up with that?? I said the same thing several times and they immediately said, "well it can't be that!" o rly? guess what it was, doc...

[YoloGx]

This discussion is so right on. I have often thought that there must be something here in the US that makes Docs so uninterested in learning about celiac. Its as if they are brain dead on this particular subject, although there are the good exceptions occasionally. One woman told me its because there is no money in it for them or for the drug companies. She may have something there. she went to some kind of conference in San Francisco on gut related problems and all the different diseases had these big diplays with lots of high tech enhancements. There was only one little cardboard table that presented celiac however...

In Europe they are not into this kind of denial from what I have heard simply because it is so prevalent there plus the experience with the wartime deprivation of gluten healing so many chronically ill people got through to the general populace -- especially since after-wards when gluten was more available, so many of these same people got sick again. Here I guess its considered kind of un-American to pay attention to it or some such drivel. Or maybe its just considered to be so like practices they make fun of from the 19th century they just can't accept it as being true? Plus by keeping us all convinced its all in our heads and that we need paliative nostrums that cover up our symptoms it keeps a steady supply of money going for these guys.

The deal is folks some of those old "witch doctor" and so called "patent medicine" brews of the 19th century against D and C for instance do help a lot! That and of course paying attention to diet. Though for us anything with grain alcohol in it is contrary to what we need to use.

Magnesium citrate does work quite well against chronic C.

But when you need extra help taking things that help clean out your liver then dandelion root or non alcoholic silymarin or milk thistle helps out the intestines do peristalsis better; the liver cleansing herbs help the liver becoming better able to release bile.

Cleaning out the liver also helps with dealing with its overload of all those undigested proteins released into the blood stream when the villi are damaged in the intestines. Marshmallow root and slippery elm help soothe and heal the lining and thus the villi.

I have said this ad nauseum but am saying it again since it really works whether or not you have C or D! But if C--then alternating yellow dock and Oregon Grape root really helps.

Meanwhile, to deal with overload in the lymphatic system (which also often accompanies all this) alternating echinacea with cleavers really helps.

For me I also throw in uva ursi occasionally just to keep my kidneys in line since the toxic environment that celiac produced has tended to overload my kidneys and thus caused inflammation and scar tissue. Actually when CC'd I often get an overload in my kidneys and the marshmallow root helps soothe the kidneys and the uva ursi creates an environment antagonistic to bacteria adhering in the urinary tract.

I make a brew once or twice a week or so as the mood strikes me in my coffee maker (though some weeks I go off it entirely just to give it a rest--I take it more religiously in the winter or when under stress). I just put the herbs in the pot and pour water into the coffee maker and leave it. One tablespoon licorice root (since I tended to have a low body temperature and low normal thyroid), two tablespoon dandelion root and (for me with a tendency to C) two tablespoon Oregon Grape Root (or yellow dock) and two tablespoon echinacea leaf or cleavers leaf. Let brew.

Unlike for coffee, I don't put the herbs in the filter part. I just put them into the glass pot and then use a strainer when I pour the brew into a cup. I add one half hot water to my cup, thus making it last longer and making it so I can make a stronger brew. Saves time and energy. I often put some into a thermos to take to work or wherever. It helps get rid of the whole issue of what to drink when visiting people since I have my own thermos which looks kind of cool since its sleek stainless steel. I put in extra water now and then as it gets low.

This is usually good for two or three days. Its easy, no fuss or much muss and it works in part because its always at the ready. And boy is it cheap (and gluten free)! Another reason no one tells you about it! It is so great to take this brew after being CC'd too, since it helps the body detox faster. I would avoid the Oregon grape root and yellow dock however while D is going on!!

Again to return to the 19th c%$#$ury with its famed Beri Beri and Ricketts, I have both read and noticed that with celiac many of us also have great difficulty making use of B vitamins (as well as minerals), me included, which adds to the chicken or egg situation since B's are needed for proper protein and carbohydrate digestion and metabolization, without which causes a kind of inherited Beri Beri that some of the nordic peoples have--and thus the distended belly and poor carb digestion, weak nervous system, achey legs and feet, poor ability to sleep etc. etc.. This too of course is poo poohed by the medical establishment. I started to take a medical biology class and in the first lesson the guy said I don't want any of you researching Beri Beri since no one in this country has it except alcoholics. Afterwards I went up and told him it wasn't true. I had it. I have to take co-enzyme B vitamins away from food in order to properly absorb B vitamins--for me especially vitamin B-1. Others here with these chronic D and C problems despite being on diet for celiac may have this condition too. They always tell you that its B-12 you have to worry about but B-1 is just as if not more important since it is more basic. I say take the whole complex since its cheaper that way and more balanced. I take two capsules a day. Within two weeks my heart stopped racing plus I became more resistant to colds, flu, calmer nerves etc. plus had better digestion and elimination etc. etc. etc. I still depend on it. I take the Country Life kind since I don't do well with the sublingual pills with sorbitol.

As far as the so called Ricketts , I have found that with more advanced healing of my intestines I am absorbing minerals better (though I still have to take them). I now find by using Bragg's apple cider vinegar with my minerals I am absorbing them better than ever. I no longer need to take E-zorb (a superior product but somewhat expensive) calcium. Now Calcium citrate is fine with the vinegar! And the magnesium citrate (one tsp. calcium to 1/2 tsp. magnesium in a glass of water with 1 tablespoon apple cider vinegar).

Now my hair is actually getting wavier and wavier and my nails stronger. My nails look healthy with good color and half moons; I used to peel my nails! Plus they had white spots on them and ridges. My hair was always thin and straight plus used to come out in my comb. I thought this was normal! Plus between the vinegar and minerals and the co-enzyme B's and the herbs etc. my hands and feet are warm instead of cold. Even as a child my hands and feet were like icicles. I used to get chill blaines as a child growing up in the SF Bay Area! Having warm hands and feet is brand new for me; it seems almost like a miracle.

Am hoping all this helps others as well.

Hope this helps! Let me know if it does... At some point I will do that book.

Bea

[Tallforagirl]

...Though for us anything with grain alcohol in it is contrary to what we need to use.

Distilled grain alcohols are gluten free. So unless your traditional/homeopathic remedy is made from beer, you'll be alright.

https://www.celiac.com/articles/11/1/Which-...safe/Page1.html

"Grain alcohols are one of those controversial items, but recent ADA guidelines indicate that all 100% distilled spirits are safe, including Whiskey, bourbon and gin. Regular beers, must be avoided, since malt (usually from barley) is an ingredient."

[rinne]

....

Now my hair is actually getting wavier and wavier and my nails stronger. My nails look healthy with good color and half moons; I used to peel my nails! Plus they had white spots on them and ridges. My hair was always thin and straight plus used to come out in my comb. I thought this was normal! Plus between the vinegar and minerals and the co-enzyme B's and the herbs etc. my hands and feet are warm instead of cold. Even as a child my hands and feet were like icicles. I used to get chill blaines as a child growing up in the SF Bay Area! Having warm hands and feet is brand new for me; it seems almost like a miracle.

Am hoping all this helps others as well.

Hope this helps! Let me know if it does... At some point I will do that book.

Bea

That is wonderful.

I've felt for years that calling such knowledge "old wives' tales" served the double purpose of creating distrust and insulting women.

Distilled grain alcohols are gluten free. So unless your traditional/homeopathic remedy is made from beer, you'll be alright.

https://www.celiac.com/articles/11/1/Which-...safe/Page1.html

"Grain alcohols are one of those controversial items, but recent ADA guidelines indicate that all 100% distilled spirits are safe, including Whiskey, bourbon and gin. Regular beers, must be avoided, since malt (usually from barley) is an ingredient."

This is not true for me. I took three drops of a homeopathic remedy, it did not say grain alcohol on the bottle, under my tongue and within minutes I knew it was a grain based alcohol and spent two days suffering for it. I had to phone to find out that it was grain based.

That was actually a minor suffering, following the ADA guidelines you mentioned I had previously thought I could enjoy an ounce of scotch. Huge mistake, a week of misery for that.

[MollyBeth]

According to what I understand, we absorb 70% of our fluids in our small intestines. Many times excess thirst is a symptom of undiagnosed Celiac or early on the diet.

I'm with Rinne on this one! I drink water like it is going out of style! I was also tested for diabetes when I was in college becasue of my heavy drinking.

[ravenwoodglass]

Distilled grain alcohols are gluten free. So unless your traditional/homeopathic remedy is made from beer, you'll be alright.

https://www.celiac.com/articles/11/1/Which-...safe/Page1.html

"Grain alcohols are one of those controversial items, but recent ADA guidelines indicate that all 100% distilled spirits are safe, including Whiskey, bourbon and gin. Regular beers, must be avoided, since malt (usually from barley) is an ingredient."

This is true for many of us but not for all. The best way for a person to know if they will react is to not consume gluten distilled grains in alcohol or vinegar while healing and then challenge it as you would any suspect item. The blanket statement that these are safe for all is as true as the statement that only DQ2 or DQ8 are the only genes. There is much to be learned about this disease and it's effects, especially here in the US.

[YoloGx]

That is wonderful.

I've felt for years that calling such knowledge "old wives' tales" served the double purpose of creating distrust and insulting women.

This is not true for me. I took three drops of a homeopathic remedy, it did not say grain alcohol on the bottle, under my tongue and within minutes I knew it was a grain based alcohol and spent two days suffering for it. I had to phone to find out that it was grain based.

That was actually a minor suffering, following the ADA guidelines you mentioned I had previously thought I could enjoy an ounce of scotch. Huge mistake, a week of misery for that.

Hi Rinne,

I hadn't thought of that ("I've felt for years that calling such knowledge "old wives' tales" served the double purpose of creating distrust and insulting women. " ). But its true. After the year 1000 in Europe, educated women were targeted plus women herbalists for several centuries. This problem of discounting old remedies may be a carry over of those earlier times (think of the old witch trials that went on for 500 to 600 years--which destroyed much of our knowledge and lore) as well as the later now infamous 19th century practices (infamous esp. in beginning medical classes that is). Whereas it is true that in the 19th century many (by then) mostly male practitioners and patent medicine vendors at times used herbs and lore indiscriminently and/or at times barbarically, the same could now be said for the current practice of over prescribing antibiotics and a variety of palliative nostrums or anti depressants for instance that cover up symptoms but do little to actually address and heal one's condition.

Speaking of which, I was just talking with a good friend who used to help with kidney dialysis. He's glad he got out of it due to using all that formaldehyde. Unless one gets a kidney transplant, one usually doesn't last long on dialysis. The thing is however, that through diet and herbs one can avoid it altogether, as I have for years after losing 1/2 my right kidney in one year using antibiotic approach of the AMA when I was a young adult (ignorant by the way of my celiac condition). I gradually figured out diet helped me plus herbs and basically saved my life rather than being on antibiotics forever (taking them constantly made my ears ring--plus it made me allergic to most antibiotics!), even though I didn't have as clear a picture as I do now.

I echo the experience that some of us are more sensitive than others despite what some officially say. I choose now just to not even go there with so called safely distilled alcohol or even vinegar. I have even gotten cross contamination glutening from kissing a boyfriend who drinks so called safely distilled whiskey or vodka etc. Plus I used to think I was allergic to all vinegar when in actuality it was the grain based vinegars.

I also used to wonder why tinctures and liquid homeopathics did nothing for me. Now I know. I have heard elsewhere its best to avoid them -- even from a naturopath who has celiac and who used to be a reg. doctor at Kaiser. It took her 11 years by the way to finally figure out what was wrong with her. Kaiser did not help. Its no wonder she switched gears. Though I have also found many naturopaths are ignorant of what celiac really is also. Hopefully this is changing for the better! There is so much ignorance out there about this condition it can at times feel overwhelming! Thank heavens for sites such as celiac.com! And for the support we give so freely to each other!

Bea

[wschmucks]

This is true for many of us but not for all. The best way for a person to know if they will react is to not consume gluten distilled grains in alcohol or vinegar while healing and then challenge it as you would any suspect item. The blanket statement that these are safe for all is as true as the statement that only DQ2 or DQ8 are the only genes. There is much to be learned about this disease and it's effects, especially here in the US.

Hi there!

Would you say that for Balsamic Vinegar? (not sure the source). I had a salad yesterday, i dont think i can tolerate the raw greens, but could it have been the vinegar too? I'm now 3 months gluten-free...Hmmm

Also-- the natropaths I went to had no clue on celiac. I had one that i worked with for about 7 months, who ran a food sensetivity test that showed i was sensetive to (among other things): wheat, rye and barley. Celiac NEVER came up...that should have been a light bulb moment.

[YoloGx]

Hi there!

Would you say that for Balsamic Vinegar? (not sure the source). I had a salad yesterday, i dont think i can tolerate the raw greens, but could it have been the vinegar too? I'm now 3 months gluten-free...Hmmm

Also-- the natropaths I went to had no clue on celiac. I had one that i worked with for about 7 months, who ran a food sensetivity test that showed i was sensetive to (among other things): wheat, rye and barley. Celiac NEVER came up...that should have been a light bulb moment.

Very big Light bulb indeed! Ignorance isn't such big bliss, eh?

Don't know about balsamic vinegar. I would think though whether or not it had an apple cider base would be the bottom line...?? Though some wine vinegars mights be OK?? Someone help us here...

Bea

[maile]

Don't know about balsamic vinegar. I would think though whether or not it had an apple cider base would be the bottom line...?? Though some wine vinegars mights be OK?? Someone help us here...

Bea

True Balsamic should be made from grapes and aged in wooden casks only. If it were mixed with another vinegar then I imagine it would be labled so or in the ingredient list.

I buy mine in an Italian store and have never seen other vinegars used as the "mother" (unlike Apple cider vinegar)

(I'm Italian)