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Please I Hope Someone Can Help I Think I'm Going Crazy


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7 replies to this topic

#1 magicchance

 
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Posted 12 September 2008 - 06:08 AM

Hello everyone
I am new to this so any help would be greatly appreciated. I'm not sure what I have these are my symptoms do these sound familiar to you guys?
depression, anxiety, stomach cramps, diarrea, loss of weight, headache, constant sinus infection, tired, swollen lymph nodes, dizziness, head fog bloating, gas, burping. I had been to GP 6 times they said post partem depression, had blood work done 2 different hospitals they said excellent, ,ct scan done found nothing. obgyn 2 paps and internal nothing found. Gastro upper & lower scope done diagnosed with mild diverticulitis, & IBS he also said biopsy came back little bit colitis. I did ask him to check for Celilac but I don't believe he did. A
I'm a baker and I've noticed recently that when I work with flour I start sneezing and I want to scratch my eyes out.
I decided to go on GLuten/Wheat free diet and feel a little better. What do you guys suggest I do.
My family thinks I'm a hypochondriac but I know something isn't right.
Please help me..
Thank you
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#2 ravenwoodglass

 
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Posted 12 September 2008 - 06:38 AM

Welcome, first take a deep breath and hugs. You are in the right place from the sounds of it. When they did the blood work did they do a celiac panel? Check. If not get one done while you are still eating gluten. It will be a false negative if you are on the diet. You could consider Enterolab testing if you are already gluten-free. They can test for antibodies up to I believe a year after you start the diet.
You also metioned that you were diagnosed with PPD. Childbirth is a common trigger for celiac and can also excaberate things for women who are already symptomatic.
After you are done with testing then regardless of the results you should do a gluten-free trial for a bit. It is going to be difficult for someone in your profession. With the eye issues I would ask for a consult with an allergist to see if you also have developed an actual allergic histimine reaction to wheat. If you are celiac then the precautions you would need to take to continue in your profession are great. You can not be breathing flour dust as that will keep the antibody reaction going and you just won't get well.
Please feel free to post any query you need and do check out the board throughly. I hope you feel better soon.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 magicchance

 
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Posted 12 September 2008 - 02:46 PM

Thank you
I don't believe they did a celiac panel. I also forgot to mention I developed a rash on both elbows that looks like poison ivy but nothing will clear it I believe it is dermetitis hepifortis. another clear sign. I'm being sent to a Gastro specialist at the CLeveland Clinic in ohio. I've already been to a gastro and had both scopes done but my GP is sending me there. All of my pain has been on my left side is this common? and as far as PPD goes my GP said I've seen this before you have PPD & IBS & Diverticulitis and put me on pills. I never felt these were the problems scope confirmed mild Diverticulitis and he said IBS but I had no prior symptoms all of this started with a double ear infection. I just hope & pray this is truly what I have and that a strict food diet will make me feel better. This is horrible. Thank you for any and all advice you can send my way. This is day 5 of the diet I felt great all day yesterday except for when I ate ice cream last night. It seemed to have sent me into a panic attack with headache which caused insomnia you know....

Thank you again and it's wonderful to hear from other people who are going through this or are just starting out.
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#4 MyMississippi

 
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Posted 12 September 2008 - 03:31 PM

I would check with doctor who did the scopes and ask for an answer to the questions---"Did you specifically check me for Celiac disease by biopsy of small intestine, and did you do a Celiac panel ?"

You had a GI work up and you are entitled to know the details of that work up.
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CeeCee

Allergic to: wheat, peanuts and Penicillin
1995 severe anaphylactic reaction to Wheat

Gluten free since Sept. 2006


"Failure is only the opportunity to begin again, more intelligently"--- Henry Ford

#5 ravenwoodglass

 
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Posted 12 September 2008 - 05:00 PM

Thank you
I don't believe they did a celiac panel. I also forgot to mention I developed a rash on both elbows that looks like poison ivy but nothing will clear it I believe it is dermetitis hepifortis. another clear sign. I'm being sent to a Gastro specialist at the CLeveland Clinic in ohio. I've already been to a gastro and had both scopes done but my GP is sending me there. All of my pain has been on my left side is this common? and as far as PPD goes my GP said I've seen this before you have PPD & IBS & Diverticulitis and put me on pills. I never felt these were the problems scope confirmed mild Diverticulitis and he said IBS but I had no prior symptoms all of this started with a double ear infection. I just hope & pray this is truly what I have and that a strict food diet will make me feel better. This is horrible. Thank you for any and all advice you can send my way. This is day 5 of the diet I felt great all day yesterday except for when I ate ice cream last night. It seemed to have sent me into a panic attack with headache which caused insomnia you know....

Thank you again and it's wonderful to hear from other people who are going through this or are just starting out.


You may be able to avoid even seeing the GI specialist. Get to a dermatologist while that rash is active. Tell him that you are being evalutated for celiac and that you think the rash may be DH. He can do a biopsy, make sure he is biopsying beside the lesion not on it. A postive diagnosis of DH is a diagnosis of celiac. No furthur testing would be needed and you could just start the diet.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#6 bsiyatadshmayah

 
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Posted 22 September 2008 - 06:54 PM

I'm a baker and I've noticed recently that when I work with flour I start sneezing and I want to scratch my eyes out.


There is a syndrome that baker's get from working with flour. Beekeepers also have a higher incidence of allergies to beestings, as do their families. With allergic reactions, it has to do with the frequency of exposure. I am no doctor, but your symptoms strongly suggest celiac disease AND wheat allergy. It is not unusual for someone with celiac disease to also have at least a temporary intolerance to lactose, as the enzyme lactase is produced by the villi, which are often damaged or destroyed (usually temporarily). It takes about 6 months, sometimes longer for this damage to heal after going gluten-free.

It would be worthwhile to find out on both counts, as celiac disease poses long term risks, and allergies can cause an immediate life-threatening event.
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#7 RiceGuy

 
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Posted 22 September 2008 - 11:47 PM

As was stated, there is a considerable chance that you will not be able to handle dairy for awhile. However, many brands of ice cream have gluten in them, so it could have been that too. Reading labels is always a must.

I hope you feel better soon!
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#8 mysty

 
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Posted 23 September 2008 - 11:17 PM

Thank you
I don't believe they did a celiac panel. I also forgot to mention I developed a rash on both elbows that looks like poison ivy but nothing will clear it I believe it is dermetitis hepifortis. another clear sign. I'm being sent to a Gastro specialist at the CLeveland Clinic in ohio. I've already been to a gastro and had both scopes done but my GP is sending me there. All of my pain has been on my left side is this common? and as far as PPD goes my GP said I've seen this before you have PPD & IBS & Diverticulitis and put me on pills. I never felt these were the problems scope confirmed mild Diverticulitis and he said IBS but I had no prior symptoms all of this started with a double ear infection. I just hope & pray this is truly what I have and that a strict food diet will make me feel better. This is horrible. Thank you for any and all advice you can send my way. This is day 5 of the diet I felt great all day yesterday except for when I ate ice cream last night. It seemed to have sent me into a panic attack with headache which caused insomnia you know....

Thank you again and it's wonderful to hear from other people who are going through this or are just starting out.



just to warn u....most ice cream is NOT gluten-free. and milk might not be tolerated for a few yrs as the gut lining improves....it can take up to a yr for ur symptoms to subside....i am so sensitive to wheat i can hardly stand in the bakery isle for more that a few mins.....i cant even imagine being exposed to flour like u are...!
to keep ur histimine low u should keep all contact with wheat limited ...so..masks..gloves...suit...and get some homeopathic histimine to take while u recover...that helps a great deal with no side effects.
also...i find many celiacs get major depression and confusion while they are detoxing or reacting to gluten..so dont panic...it should pass when u have elimated all the gluten over the next 6 months to a yr.
i hope ur bowels heal up too...i was undiagnosed till i was 11...and the nerves in my bowels were damaged beyond repair...so needless to say i have alot of trouble...i live next to a colonic machine to maintain my health.
otherwise my life is almost pain free and wonderful...and my family is very supportive.
keep in mind that if ur immune system is under alot stress dealing with a conditions like celiac...it makes u much more prone to colds and flu and other minor illnesses..so im not suprised to hear about ur ear infections...this should also improve as u get rid of gluten around u:)
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