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So Frustrated - Biopsy Report Hardly Says Anything


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#1 greenbeanie

 
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Posted 05 July 2013 - 01:35 PM

I am frustrated to tears again. After waiting four months to see a new PCP who would take my concerns seriously, then doing a horrible gluten challenge and waiting another two months to see a GI, I just got the letter that supposedly contains my endoscopy report. However, they didn't send me the actual pathology report or blood test results at all. All I got was a form letter that lists a standard selection of things like epophagitis, gastritis, and H. pylori. The doctor didn't check any of those boxes and only checked the "Other" box, noting "biopsies showed some inflammation of the esophagus from acid; nothing worrisome". That's it! No explanation, no recommendations for treatment, nothing. And they didn't include my tTG, total IgA, and DGP test results, which should have been in several days ago.

 

I called immediately upon receiving the letter, but the office is closed for a four-day weekend. Obviously this isn't the actual pathology report itself. I will call first thing Monday and request the pathology report and the blood test results, but my follow-up appointment isn't until mid-September! I know they did take multiple samples from my duodenum, and they were specifically checking for celiac, so I assume those biopsies were normal or the doctor would have noted it (even in this superficial report summary). They said there are no appointments available at all for the next ten weeks. 

I am just so discouraged. I've been suffering for over 30 years, and I really thought that I'd finally have a concrete diagnosis at last (especially after my daughter was confirmed as having celiac). I don't know why a diagnosis is so important to me - I guess it really shouldn't be. But I've had so many people tell me that there's nothing wrong, that it's all in my head, and that 20+ years of diarrhea, rashes, SI joint pain, insomnia, infertility, and loss of coordination are all caused by stress. If one more person tells me that I should just relax and all these problems will go away, I'm going to scream!

 

When I met with the GI doctor for the initial consultation, she took one look at my list of symptoms and the redness covering my whole torso and said that no matter what the biopsies show, I should definitely go gluten-free immediately. So I have. And already I've seen huge improvements, though I feel pretty awful in general (but I think that's either gluten withdrawal or an after-effect of consuming wheat daily for the gluten challenge; I've only been off gluten for a week). I know I'm in no state to look at things objectively right now, and I'm very fortunate that my doctor is taking the gluten issue seriously even without tests that indicate celiac. But I've been waiting and trying my whole life to figure out what's going on, and the thought of waiting another week to get copies of the reports is overwhelming right now, not to mention the thought of waiting 2 1/2 months just for my follow-up to discuss this with the doctor. 

 

There's really no question in here, I guess. Thanks for listening to me vent. I had just been so hopeful that this life-long health care nightmare was about to end, and now it's not. The obvious next step would be to try to get my rash biopsied to see if it's DH, but I just can't handle any more referrals, appointments, or stressful conversations with doctors right now. 

 

 


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Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosis still unclear after extensive testing: Atypical wheat allergy, severe NCGI, or false negative celiac tests? Doctors disagree.Gluten challenge caused acute gastritis, esophagitis, and angioedema that lasted 4 months and was eventually determined to be a sulfite allergy. Gluten light for 15 years, then gluten free since June 2013.
Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Improved greatly within six months of going gluten-free.


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#2 ravenwoodglass

 
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Posted 05 July 2013 - 02:38 PM

(((((((((((((((((((((((((((((((((((((((((((((((((((HUGS)))))))))))))))))))))))))))))))))))))))))))))))))))

 

I think there are a lot of us here that know quite well how you feel as we have also endured years of illness and inconclusive or false negative tests.

IMHO you are doing the right thing by giving the diet a good strict go. Hopefully by the time you are able to get in to your followup with the GI you will be feeling much, much better.


  • 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)

#3 GottaSki

 
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Posted 05 July 2013 - 03:11 PM

Yep....I completely understand your frustration!

I also think you are doing the next best thing by strictly removing gluten.

Hang in there...and come vent here anytime --- you are sure to find many of us have been there and simply wish others were not walking similar paths.

Here is another HUGE electronic hug for you :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#4 Profa40

 
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Posted 05 July 2013 - 03:30 PM

When you call them on Monday be sure and ask if there's a waiting list you can get on in case someone cancels. This has worked for me in the past and then I follow up a week or two later and see if I'm still on the waiting list. The second time I called they had an appointment for the next week and I took it. Worth a shot. Hang in there! It also helps to write down any questions and take them with you as my doctor was called away for a phone call and That was the end of my appointment, would've helped to be really organized.
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#5 1desperateladysaved

 
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Posted 06 July 2013 - 04:18 AM

Sorry, to hear about the bump you just jolted over.  I am just hoping you will keep going.  The frustration ebbs and flows.  Expect to be overwhelmed and frustrated for a while.  Still, realize you are moving in the right direction to discover what it is that keeps you down.

 

30 years, it sounds familiar.  Get Well Beanie ***Here's some flowers.

 

D


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#6 spirit_walk

 
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Posted 06 July 2013 - 09:21 AM

I am currently feeling a lot like you. I haven't been suffering for 30 years, but the last two have been the worst of my life. I've gone through numerous doctors and put the family in a lot of debt to find answers only to be told every test is negative. I can't imagine feeling this way for the rest of my life, or worse, the symptoms progressing to more issues. I am waiting on results from my biopsies, and I should get them in next week. But I haven't eaten gluten for 9 months, so I'm thinking they're probably going to tell me everything looks fine. Like you, I need a diagnosis. The joint pain and popping are almost unbearable. My wife and daughter are eating a much healthier diet now, but they both still eat gluten daily. I can't ask them to stop eating bread and all the things that come with the gluten diet if I'm not sure I have a gluten issue myself. If I'm told that I'm Celiac or something similar, then it would be much more understandable to go full blown gluten free in my household. But the problem is that I am working very hard to keep gluten from my diet, and yet it's still around me daily. I've even bought shampoo, shaving cream, soap, etc that is gluten free. But, as I eat my buckwheat, gluten-free oats, toast, etc, my wife and daughter are having toast, muffins, cereal bars, etc and it's always on my mind. It's very frustrating. Meanwhile I look like a skeleton with all the weight loss from eating a carb-less diet. Going without food with gluten, eggs, and dairy are taking their toll on my body with my high metabolism.

 

I take it a day at a time. Some are worse than others. Some are better. Today is one of the bad ones where everything is popping and the joints are hurting. It's probably from the processed gluten-free cereal I ate last night. I'll try to remove that, but boy do I miss food. Sorry to vent on your thread, but know that you're not alone. :(


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#7 ravenwoodglass

 
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Posted 06 July 2013 - 01:40 PM

 I've even bought shampoo, shaving cream, soap, etc that is gluten free. But, as I eat my buckwheat, gluten-free oats, toast, etc, my wife and daughter are having toast, muffins, cereal bars, etc and it's always on my mind. It's very frustrating. Meanwhile I look like a skeleton with all the weight loss from eating a carb-less diet. Going without food with gluten, eggs, and dairy are taking their toll on my body with my high metabolism.

 

I take it a day at a time. Some are worse than others. Some are better. Today is one of the bad ones where everything is popping and the joints are hurting. It's probably from the processed gluten-free cereal I ate last night. I'll try to remove that, but boy do I miss food. Sorry to vent on your thread, but know that you're not alone. :(

You might want to consider dropping the gluten free oats for a bit. Some of us react to them and the only real way to tell is to drop them for a while and then add them back in and see if your symptoms flare.

I don't know if it will apply for you but not knowing I was intolerant to soy kept my joints painful for a long time. Finally dropping gluten free foods with soy helped a lot.

It can take a long time to heal. Do all you can to prevent CC and hang in there.


  • 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)

#8 greenbeanie

 
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Posted 06 July 2013 - 02:38 PM

Thanks ravenwoodglass, Lisa, and Diana. Your support has meant a lot to me these last few weeks. At least my hair is falling out less now than it was during the gluten challenge, so that's certainly good. Plus, I've only smacked my head with the cupboard door once this week! So things are looking up. It is crystal clear to me that gluten is the source of my problems, and in time I'm sure I'll come to terms with the lack of an official diagnosis. And as a mom, my most important mission was accomplished: getting my daughter diagnosed so that she doesn't have to go through this mess herself. 

 

Good idea about the cancellation list, Profa40. I was on it before, but it may help if I keep calling every week to check. 

 

I hope you get a clear diagnosis, spirit_walk. Cutting out oats and soy definitely seem worth a try. Within a few days of stopping gluten, it became obvious to me that the tiny bit of soy milk in my coffee was making my inner ears itch. Given all the intestinal stuff going on, that was just a minor problem before, but it was nice to figure it out and cross that problem off my list.


  • 0

Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosis still unclear after extensive testing: Atypical wheat allergy, severe NCGI, or false negative celiac tests? Doctors disagree.Gluten challenge caused acute gastritis, esophagitis, and angioedema that lasted 4 months and was eventually determined to be a sulfite allergy. Gluten light for 15 years, then gluten free since June 2013.
Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Improved greatly within six months of going gluten-free.


#9 ravenwoodglass

 
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Posted 07 July 2013 - 03:23 AM

I would call daily about the cancelation list. Call about an hour after the office opens. Folks will often cancel their appointments early on the day they are scheduled. Be polite but by calling every morning they may just get tired of hearing your voice and slide you into one that just opened up a few minutes before you call.

By the way some doctors will give you an 'official' diagnosis based on your recovery from symptoms gluten free. So be strict and you may find that by the time your sceduled appointment arrives you have seen such a turn around that the doctor gives you the diagnosis based on your recovery and family history.


  • 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)

#10 1desperateladysaved

 
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Posted 07 July 2013 - 04:05 PM

Write down symptoms that changed, or change as you go back to gluten free, or from memories.  If you keep track, as you go, you may get a better list then if you just rely on memory.  Hair loss when gluten challenging would surely go on the list.

 

D


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