I'm Tired Of Living Like This....

[Guest Robbin]

  Confused in Iowa said:

It is hard - my 11 year old has recently (within 2 months) been diagnosed with Celiac....and he has absolutely NO symptoms of the disease. From his biopsy, they said his villae (forgive me if I don't spell these words correctly), but anyway, these were just not standing straight up as they should be in his small intestine but more just kinda drooping. Of course this was from the dietician who shared the report with me...the dr, who is a pediatric dr. just said you have Celiacs, go 100% gluten free, and see a dietician. WOW what a shocker. My son also has juvenile diabetes. I'm still somewhat in the angry and frustrated and in the BS stage, but I'm coming out of it. We are working to try different breads, because that's the hard one for us. He likes the good ol' white bread for his lunches at school. I think I've made 4 loaves of bread in the past few days that end up in the garbage.....Plus eating out...the driving through McDonalds cuz we are out and about and need to eat. I wish it was me...I could easily live without McDonalds, Pizza Hut, etc. Just heartbreaking to think of it for my son for the rest of his life. But as I tell my son and myself, he's a perfectly healthy little boy, can still do his sports, and this is just a little hurdle in life we have to jump.

So, with my son not having any symptoms and no complications from eating wheat...it is hard to change your lifestyle. But I've been going out on the board a lot lately and reading and trying to consume my life with it's ok, we can do this thinking instead of the poor me.

I do have to say, that I have noticed in the last several days, that my son is much more happier. He's always been a short tempered type of a little guy which I always blamed on his father's side of the family (haha), but I am beginning to think it was the gluten causing the emotional turmoil in his life. I'm really anxious to see if his grades improve in school also.

I have to say tho, it's nice to see that other people get angry, and frustrated at times...cuz it makes me feel like it's ok to be angry once in awhile.

I am so sorry your little guy has to go through so much, but I agree, it is sooo good you have caught it now. My son has type 1 diabetes as well-since age 9. He is now 21 and refuses to listen to anything about celiac. I am so afraid he has it-he has many symptoms of it-gas, bloating, occasional sudden D, rashes, but he is so fed up with drs. and the diabetes care that he just can't accept that there may be something yet again to deal with. I live in fear for him. Take care all of you and glad we at least have this board to come to when we need support. Shai--vent away, it really does help!

[tiredofdoctors]

Dear Confused in Iowa: Welcome to the board! Ranting is what we do best sometimes Celiac is an autoimmune disease, and quite frequently goes hand in hand with diabetes and other autoimmune diseases, as well. I am so sorry for your son -- and you. What a challenge. Not only struggling with the diabetes, but NOW with another dietary restriction. You have every right to be angry, frustrated and I think, exhausted! I wish you luck, I'll say a few prayers for you if that's Okay, and know that you are NOT alone. This board has on it some of the finest people you will ever meet. They are intelligent, informed, constantly seeking out information in addition to being kind, compassionate and bust-a-gut funny!!! You've come to the right place.

[gfp]

  shai76 said:

I'm sure I'm not pregnant. Besides, my nausea was much much worse with pregnancy. I have been a little stressed lately, which could also have an impact on it.

And definitly forget the eggs! They make me super sick!

The only medicine I take is nexium. My doctor doesn't like prescribing too much since I have so many allergies to foods and drugs. I have to be really careful. I've taken anti-nausea medicine a long time ago and it caused severe depression for me. It was compazine. I've been kind of scared of them since.

Hmmm I can't take Nexium because I'm a poster child for the adverse reactions (even though it works very well for me) but I can take generic omeprazole??????

However just as importantly I no longer need to take either.

I think this is 80% being gluten-free but I also have an extra secret weapon which I use when I need that bit extra which is food combining. I really suggest you give it a try because it really helped me and one thing I do after an accidental glutening is food combining and I find it helps me settle my stomach and digestive system faster.

I first read a book called "Fit for Life" and to be honest they are a bit over enthusiatic for me (in a Venice beath sorta way) and later found a book called "The Kensington diet" ..

p.s. I was put on the Nexium "to give my stomach a rest" but I find that the diet works much better and I don't get all the side effects!

[Fiddle-Faddle]

Hey, gfp, I tried to go off Nexium, and it was a disaster (and I'd been gluten-free for 7 onths). I'd been on 40 milligrams; I was hoping I could take Zantac in small amounts if necessary, but that didn't begin to cover the major acid reflux that came back, so I reluctantly went back on Nexium. The darn stuff comes in a capsule, so there's no way to wean off. Do you have any specific advice for me?

[shai76]

I even had reflux while gluten free. I get serious breathing problems from it since I've been a life long sufferer. My son has it, my mom does,a nd bothmy sisters! I will probably be onthe nexium as long as it keeps working. Though I haven't noticed any side effects. What sort of side effects can it cause?

[gfp]

  Fiddle-Faddle said:

Hey, gfp, I tried to go off Nexium, and it was a disaster (and I'd been gluten-free for 7 onths). I'd been on 40 milligrams; I was hoping I could take Zantac in small amounts if necessary, but that didn't begin to cover the major acid reflux that came back, so I reluctantly went back on Nexium. The darn stuff comes in a capsule, so there's no way to wean off. Do you have any specific advice for me?

Yeah I am OK with the generic omneparazole ... its a tiny different to Nexium (just how the molecule is bound if I remember) .. problem is Nexium is so expensive you don't wanna just throw it out.. the generic stuff isn't much cheaper either but it doesn't give me anywhere near the same adverse reactions (basically all over body headache, shoulders and spine as well as a thick head)

  "shia" said:

What sort of side effects can it cause?

There are a whole set but for me its an "allover headache" starting in the head being fuzzy (not like a migrane) but then extending into my shoulders and back... and a general overall nausia. (which is what made me think of you)

Here is the OFFICIAL list

I have to say though it works very well (knocks ranitidine on effectiveness)

Open Original Shared Link

For both of you I would also say give a food combining diet a try..... it worked for me from being in the panic attack unable to breath stage to quitting the drugs in a few weeks. Now if I get glutened I will start getting GERD back.... and I take a couple of omneparazole and then do strict food combining.... I really think it does help.

  Quote

Body as a Whole: abdomen enlarged, allergic reaction, asthenia, back pain, chest pain, chest pain substernal, facial edema, peripheral edema, hot flushes, fatigue, fever, flu-like disorder, generalized edema, leg edema, malaise, pain, rigors; Cardiovascular: flushing, hypertension, tachycardia; Endocrine: goiter;

Gastrointestinal: bowel irregularity, constipation aggravated, dyspepsia, dysphagia, dysplasia GI, epigastric pain, eructation, esophageal disorder, frequent stools, gastroenteritis, GI hemorrhage, GI symptoms not otherwise specified, hiccup, melena, mouth disorder, pharynx disorder, rectal disorder, serum gastrin increased, tongue disorder, tongue edema, ulcerative stomatitis, vomiting; Hearing: earache, tinnitus; Hematologic: anemia, anemia hypochromic, cervical lymphoadenopathy, epistaxis, leukocytosis, leukopenia, thrombocytopenia; Hepatic: bilirubinemia, hepatic function abnormal, SGOT increased, SGPT increased; Metabolic/Nutritional: glycosuria, hyperuricemia, hyponatremia, increased alkaline phosphatase, thirst, vitamin B12 deficiency, weight increase, weight decrease; Musculoskeletal: arthralgia, arthritis aggravated, arthropathy, cramps, fibromyalgia syndrome, hernia, polymyalgia rheumatica;

Nervous System/Psychiatric: anorexia, apathy, appetite increased, confusion, depression aggravated, dizziness, hypertonia, nervousness, hypoesthesia, impotence, insomnia, migraine, migraine aggravated, paresthesia, sleep disorder, somnolence, tremor, vertigo, visual field defect; Reproductive: dysmenorrhea, menstrual disorder, vaginitis;

Respiratory: asthma aggravated, coughing, dyspnea, larynx edema, pharyngitis, rhinitis, sinusitis;

Skin and Appendages: acne, angioedema, dermatitis, pruritus, pruritus ani, rash, rash erythematous, rash maculo-papular, skin inflammation, sweating increased, urticaria; Special Senses: otitis media, parosmia, taste loss, taste perversion;

Urogenital: abnormal urine, albuminuria, cystitis, dysuria, fungal infection, hematuria, micturition frequency, moniliasis, genital moniliasis, polyuria; Visual: conjunctivitis, vision abnormal.

Endoscopic findings that were reported as adverse events include: duodenitis, esophagitis, esophageal stricture, esophageal ulceration, esophageal varices, gastric ulcer, gastritis, hernia, benign polyps or nodules, Barrett’s esophagus, and mucosal discoloration.

The incidence of treatment-related adverse events during 6-month maintenance treatment was similar to placebo. There were no differences in types of related adverse events seen during maintenance treatment up to 12 months compared to short-term treatment.

Two placebo-controlled studies were conducted in 710 patients for the treatment of symptomatic gastroesophageal reflux disease. The most common adverse events that were reported as possibly or probably related to NEXIUM were diarrhea (4.3%), headache (3.8%), and abdominal pain (3.8%).

Postmarketing Reports - There have been spontaneous reports of adverse events with postmarketing use of esomeprazole. These reports occurred rarely and are listed below by body system:

Blood And Lymphatic System Disorders: agranulocytosis, pancytopenia;

Eye Disorders: blurred vision; Gastrointestinal Disorders: pancreatitis; Hepatobiliary Disorders: hepatitis with or without jaundice;

Immune System Disorders: anaphylactic reaction/shock; Musculoskeletal And Connective Tissue Disorders: myalgia; Psychiatric Disorders: depression;

Skin and Subcutaneous Tissue Disorders: alopecia, erythema multiforme, Stevens-Johnson syndrome, toxic epidermal necrolysis (TEN, some fatal).

[Fiddle-Faddle]

This is really interesting--I am great with Nexium, but Omeprazole doesn't really work for me. Neither does Ranitidine. What food combinations do you use?

[gfp]

  Fiddle-Faddle said:

This is really interesting--I am great with Nexium, but Omeprazole doesn't really work for me. Neither does Ranitidine. What food combinations do you use?

Well food combining is a bit misleading, its more accuratly food non-combining...

Basically its seperating meals into high protein (acid digestion) and carbs (enzymic less acid) and not eating them at the same time.

You can google "Hay's diet" or grab a book.

I first read (on the advice of a friends wife with Chron's) Fit for Life.

To be honest I found it a bit too "hippy" (bearing in mind I'm pretty hippy myself) but i then found a UK book called "The Kensington diet" which was a bit more down to earth but really saying the same EXCEPT he recommends staying away from "problem foods" or eating them only 1 day a week...

Problem foods are what WE would think. Gluten, Dairy and Soy and this is how I first discovered my gluten problem.

I'd say give it a go.... but Im not sure if it will work as well with the acid inhitors since its "meant" to let your body produce the right amount naturally. Thing is its NOT going to hurt you even if it doesn't work for you....

[Fiddle-Faddle]

Thanks, gfp. BTW, I never took Latin, can't quite figure out your signature. Translation, please?

[gfp]

  Fiddle-Faddle said:

Thanks, gfp. BTW, I never took Latin, can't quite figure out your signature. Translation, please?

Heck, can't I be cryptic....?

Its Julius Cesear from De Bello Gallico, Book III, Ch. 18 "Men/man willingly believe what they wish."

[jerseyangel]

  gfp said:

Its Julius Cesear from De Bello Gallico, Book III, Ch. 18 "Men/man willingly believe what they wish."

Love it!

[shai76]

  gfp said:

Yeah I am OK with the generic omneparazole ... its a tiny different to Nexium (just how the molecule is bound if I remember) .. problem is Nexium is so expensive you don't wanna just throw it out.. the generic stuff isn't much cheaper either but it doesn't give me anywhere near the same adverse reactions (basically all over body headache, shoulders and spine as well as a thick head)

There are a whole set but for me its an "allover headache" starting in the head being fuzzy (not like a migrane) but then extending into my shoulders and back... and a general overall nausia. (which is what made me think of you)

Here is the OFFICIAL list

I have to say though it works very well (knocks ranitidine on effectiveness)

Open Original Shared Link

For both of you I would also say give a food combining diet a try..... it worked for me from being in the panic attack unable to breath stage to quitting the drugs in a few weeks. Now if I get glutened I will start getting GERD back.... and I take a couple of omneparazole and then do strict food combining.... I really think it does help.

Thanks for the list. I wonder if that's what is making my stomach hurt bad for days, even when gluten free, and it gets all swollen. I've had a sore swollen belly for going on 3 days straight without a break. I am planning on going to the doctor Monday if it's still there. :/

[gfp]

  shai76 said:

Thanks for the list. I wonder if that's what is making my stomach hurt bad for days, even when gluten free, and it gets all swollen. I've had a sore swollen belly for going on 3 days straight without a break. I am planning on going to the doctor Monday if it's still there. :/

shai76:

Its well worth testing and Nexium is massively over prescribed (IMHO). I had one GP practically wouldn't write me a script without adding it even if I didn't ask (dumped her)!

I think some people tolerate it better than omneparazole and others worse... but both of them take a few days to actually kick in fully.

iether way my GERD was really bad... I was having panick attacks not breathing and unable to sleep and 10 yrs or so ago before my celaic diagnosis and before omneparazole was invented I was told by my GI I would be taking ranitidine for life in massive doses. (500mg a day)

The ranitidine is not so effective and so I still had problems so I tried the Fit for Life out of desperation.

Even on the ranitidine I was loosing it... I once missed a flight because i wasunable to breath, puking and the pilot refused to take me (ironically on my way back to Europe for GI testing)

If I had the omneparazole or nexium I might never have go so desperate to try a quack cure like "fit for life" ...

Jeez, I just thought I lost touch with the person who gave this to me.... Im going to look her and her hubby up since he was a long term chron's sufferer.

So what I'm saying is please consider my prognosis about ranitidine was wrong... I thought I would never be off it and between gluten-free and occaisional food combining when I mess up (like drinking champagne and being glutened) I never touch or need drugs for this. I also lost a LOT of weight... which I'm sure helps.....

[shai76]

  gfp said:

shai76:

Its well worth testing and Nexium is massively over prescribed (IMHO). I had one GP practically wouldn't write me a script without adding it even if I didn't ask (dumped her)!

I think some people tolerate it better than omneparazole and others worse... but both of them take a few days to actually kick in fully.

iether way my GERD was really bad... I was having panick attacks not breathing and unable to sleep and 10 yrs or so ago before my celaic diagnosis and before omneparazole was invented I was told by my GI I would be taking ranitidine for life in massive doses. (500mg a day)

The ranitidine is not so effective and so I still had problems so I tried the Fit for Life out of desperation.

Even on the ranitidine I was loosing it... I once missed a flight because i wasunable to breath, puking and the pilot refused to take me (ironically on my way back to Europe for GI testing)

If I had the omneparazole or nexium I might never have go so desperate to try a quack cure like "fit for life" ...

Jeez, I just thought I lost touch with the person who gave this to me.... Im going to look her and her hubby up since he was a long term chron's sufferer.

So what I'm saying is please consider my prognosis about ranitidine was wrong... I thought I would never be off it and between gluten-free and occaisional food combining when I mess up (like drinking champagne and being glutened) I never touch or need drugs for this. I also lost a LOT of weight... which I'm sure helps.....

I've had reflux since birth and so has my son. He was on ranitidine at only a few weeks old, and then moved to prilosec twice a day at about 5 months and has been taking it since. They didn't have those meds when I was a kid. My mom would give me baking soda mixed with water. When I was a teenaged I would keep mylanta in my school locker and take swigs of it all day long. In college I was put on ranitidine, but that stopped working for me eventually (as it does for most). Then I was put on prilosec and it worked a little but not so great. I was also on protonix but had an allergic reaction to it. So my doctor thought he would try nexium, and it has helped me tremendously. I can breath normal now, and I'm not sick all the time. Before the nexium I would count how many times I refluxed and the highest I got was 37 times within a half hour of eating. I didn't barf a lot, but it would go up and down all day long. I have gastritis too, so there is that gnawing feeling in my stomach. I've had numerous scopes and bariumn swollows in my life, and my son is only 2 and has had 2 upper GIs and a scope. Ain't it wonderful he followed in my foot steps?