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All Help Needed


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6 replies to this topic

#1 Leticia33

 
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Posted 20 August 2004 - 04:34 PM

I have always had a "nervous stomach". I didn't have too many problems in my teen years but since I hit 30 it's been down hill. I've had the really severe bloating, the gas that rumbles so bad that it sounds like a severe thunderstorm, I have alot of pressure under my ribs and in my back and the diahreeah was a daily thing ....never a normal bowel movement. If it wasn't diahreeah...it was constipation. The GI did a colonscopy thinking it was colitis..but the test was good. Then I had the endoscopy a week after that and that came back good except he said my intestines were severly irritated. Well, duh, I already knew that. He told me to stay away from spice, nuts , carbonated beverages for a week. Now, My grand mother is celiac...but I never took too much interest in what that REALLY was until now. I went on the glutin free diet 3 weeks ago....The diahreeah cleared in 2 days. I don't even remember NOT having diahreeah and I haven't had it now in 3 weeks. But the bloating and gas is just still really bad. I've really been living a hell for going on 7 months now and I'm at my wits end. The GI told me to come back in 6 weeks.....appearently I'm in no need of help til then. I've lost all faith in doctors. I told him my grandmother was celiac and he just said " yea, okay." I just don't know what else to do. I did go out and buy glutin free digestive enzymes after reading on here how important those are. I'm just wondering how long do I have to be glutin free before the bloating and gas ease? The heartburn has gotten alot better also since I quit with any wheat product. Heart burn has always been really bad with me. I'm lactose intolerant...so I'm trying to be careful there too. Then my mother told me that the only kind of pain reliever that my grandmother can take is tylonol. All others contain wheat. Well I've been an advil poppin fool forever cause of insane headaches and muscle aches. But I haven't had to take anything now for headaches for a week which is NOT like me. I LOVE this site and my son was the one who found it for me while trying to find info. He's an angel, I swear. When I started reading all the posts......I could've cried. Everyone here is going through the exact same thing..it's very comforting to know I'm really not the only one on earth that has been living like this. Any and ALL info and advice would be so greatly appreciated. The glutin free diet has eased the diahreeah, the heartburn and the headaches..........when will the bloating and gas ease??? I'm so thankful for any and all advice.
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#2 GEF

 
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Posted 20 August 2004 - 07:05 PM

Hello Leticia and welcome to the forum!

My goodness after reading your post, I just wanted to give you a hug. You've been through so much! Sometimes it really is comforting to know that you're not alone in all of this. If I could tell you anything, I heard that GasX is not gluten-free... so you might not want to try that. I'm not gluten-free yet... since I've got to wait for more testing to be done. Bloating is my constant story nowadays.. I'm all too familiar.

I'm so glad to hear that the diet is working well for you! Isn't it great to not have to take med's to treat a condition for once?

There are many here who I'm sure can help recommend what to do about your lingering symptoms. But, in the meantime I wanted to write and welcome you.

Gretchen
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#3 judy04

 
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Posted 20 August 2004 - 07:17 PM

:D Dear Leticia,

I love your name, it was my grandmother's middle name.
Your symptoms sound like mine used to be. The only way I learned
to control my symptoms was to keep a food journal, to pinpoint
what foods were causing problems. I had to give up all dairy,milk,
yogurt, tomatoes, onions, as well as wheat and oats for several
months until i healed. After almost 9 mos I am pain free,symptom
free. I can now eat most foods except gluten of course. Hope this helps..
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judy


gluten-free since 11/03, neg biopsy, IGA elevated

#4 rmosby

 
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Posted 20 August 2004 - 08:43 PM

Hi. This is my first time posting so hope I do it right. :rolleyes:

My 20 yr. old daughter has had digestive troubles most of her life. Not so much diarrhea but bloating, nausea, general discomfort. As many of you report, we have had the usual diagnoses ranging from emotional tension to hyperacidity, pre-ulcer, and gastric infection.

This past month was particularly bad and my daughter just kept going to the clinic every time she "couldn't stand it" anymore. She said, mom, something's GOTTA be wrong with me. Finally a parttimer at the after hours clinic ordered bloodwork done and within a few days our regular doctor phoned one evening and told my daughter it looked like she had Celiac. He explained that she would have to avoid wheat etc, that it would be for life and that not adhering to the diet could be very dangerous and even lifethreatening. That was it. No further instructions.
So I went on the internet and found this site where I have learned a whole lot of wonderful, useful information. Thankyou!!

Shortly afterward, a dietician from our hospital phoned to say she'd had a referral (from the parttimer) for dietary counselling for my dtr. She asked whether a biopsy had been done and when I told her no, just blood work, she said the biopsy was the "gold standard" (there's that word again!) for accurate diagnosis and that as the gluten-free diet was "a very demanding and for-life" diet" .....what did we want to do? I offered the idea of stool sample for dx confirmation and she reiterated the gold standard bit.

Well, I had made an appt. with our family dr. to discuss all these things and was dismayed by his response. He said that a transglutaminase result of 200 (anyone know the norm?) showed pretty much without doubt that she has Celiac. I offered some of what I had been reading on this site, particularly what seems to be wellsupported info, and he more or less picked up the phone in a huff and called the surgeon for an appt to see my dtr and decide whether "he thought a biopsy was necessary".

To backtrack a bit, when our GP phoned, I immediately took steps to remove all wheat from our dtr's diet. Then, after the DIETICIAN called, I realized if a biopsy was ordered, a gluten-free diet would cause inaccurate results so I suggested we should wait awhile, go back to regular diet (Which, incidentally, is fairly low gluten for my dtr. anyway. She has never liked bread, says pasta makes her sick, so has always avoided them anyway). Turns out the surgeon can't consult with us till Nov. 24, more than 3 months away, and that isn't even for the biopsy. Is this typical? (We are on Vancouver Island in Canada) Is there anything we should do to hurry things along? In the meantime, my daughter is increasingly uncomfortable. Today, she went for a lactose intolerance test (which I'm wondering why it's being done after all this time, only after I told him we took our daughter off dairy more than a year ago which has helped somewhat. Soy only - which I have read can cause trouble too......)

So anyway, sorry for all the little details but don't know how else to paint the picture.

I've read the various opinions here about biopsy and wonder if there isn't one more point to consider. Would it not provide a useful marker, say for sometime in the future, to determine the rate of healing, or if conditions worsened, to give the dr something to compare to? Just a thought. and maybe not worth the invasiveness. What do you think?
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#5 burdee

 
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Posted 20 August 2004 - 10:00 PM

Leticia: If avoiding gluten has resolved the diarrhea/constipation, but you still have bloating and gas, I would recommend: FIRST, you do more careful investigation of EVERYTHING that goes into your mouth to prevent accidental gluten contamination. Have you checked all the ingredients of every processed food? Do you avoid licking envelopes or stamps? Have you checked your toothpaste, vitamins, other OTC meds or prescription meds? Have you prevented cross contamination in your own kitchen from gluten sources used by other family members?

SECOND, if you are lactose intolerant, are you using 'lactaid' supplements to prevent gas/bloating when you consume dairy? If you use lactaid and STILL have gas/bloating, you may also be sensitive to/intolerant of CASEIN (the milk protein, unlike lactose, the milk sugar). I didn't realize I was casein intolerant until I was tested. When I eliminated ALL dairy I lost my recurrent acid reflux, heartburn and chronic sinus/allergy symptoms (as well as bloating, gas and intestinal cramping).

THIRD, if you eliminate gluten & dairy and STILL have problems with gas/bloating, track your symptoms to what you eat. If you can eat very simple, fresh foods, like meats, vegies, fruits and even gluten-free grains, you might be able to trace whether you have allergies/sensitivities to any other basic allergens (like soy, eggs, corn, nuts, shellfish, etc.) If you don't have problems with simple, fresh foods, then slowly add your favorite regular condiments or processed foods and observe your body's reactions. Since I first eliminated gluten, then later dairy, then lastly soy, I can actually tell by my body's symptoms which of those I have accidentally ingested.

Good luck and hang in there. This gluten/trigger food sleuthing does get easier, despite the steep initial learning curve. ;)
BURDEE
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Gluten, dairy, soy, egg, cane sugar, vanilla and nutmeg free. Enterolab diagnosed gluten/casein intolerant 7/04; soy intolerant 8/07. ELISA test diagnosed egg/cane sugar IgG allergies 8/06; vanilla/nutmeg 8/06. 2006-10 diagnosed by DNA Microbial stool tests and successfully treated: Klebsiella, Enterobacter Cloaecae, Cryptosporidia, Candida, C-diff, Achromobacter, H. Pylori and Dientamoeba Fragilis. 6/10 Heidelberg capsule test diagnosed hypochloridia. Vitamin D deficiency, hypothyroiditis, hypochloridia and low white blood cells caused vulnerability to infections. I now take Betaine HCl, probiotics, Vitamin D and T3 thyroid supplement to maintain immunity.


#6 tarnalberry

 
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Posted 20 August 2004 - 10:08 PM

burdee, much along the lines of the third suggestion you had, I'll be doing an elimination diet over the next four weeks - starting with very hypoallergenic foods, and then testing things throughout the following three weeks. (though I'm needing to test corn as well as the major allergens/intolerances.)
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#7 judy04

 
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Posted 21 August 2004 - 12:05 AM

Dear rmosby,

Most Dr. want to see the actal proof before diagnosing Celiac, however
others will accept that someone has actually improved on a gluten-free diet. I
myself would never go back on gluten just to prove the diagnosis because i
never want to be that sick again. She has the positive blood study. She probably could be scoped later, but that's a decision only you and she can make.You said
she is increasingly uncomfortable, does she work or go to school? Is it interfering
with her daily activities? We have Enterolab testing in the states which doesn't depend on whether she is off gluten or on. I don't know if it is available
from Canada, although it is done through the mail. A lot of people on this site
seem satisfied with the results, although most Drs. won't recognize the findings

The only other suggestion is to try to get an appt. with a Gastroenterologist
for another opinion. Maybe he could perform the biopsy sooner. I hope this
helps you some, good luck in getting help for your daughter and welcome to the board!
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judy


gluten-free since 11/03, neg biopsy, IGA elevated




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