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Positive Biopsy / Negetive Bloodwork


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#1 jamillusions

 
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Posted 22 September 2010 - 09:32 AM

Hi, I was just recently sorta diagnosed and now I am confused.

In May I was having stomach issues, more diarrhea/constipation than normal. Bad bloating, gas, stomach pain. I suffer from GERD so my general doctor chalked it up to be reflux flaring up after at normal ultra sound and CT scan (although not related my CT scan showed that I had probably fibroids)

Being the freak about my health that I am and not being satisfied with his answer. I scheduled to an appointment with my husbands GI. He switched my GERD med, and scheduled me for a endoscopy and a colonoscopy. The endoscopy biop indicated I had Celiac. Turned over villi and inflammation. I then went and had all of the Celiac bloodwork done.

Everything was negative. So now I am wheat and gluten free for 3 months and having the endoscopy done again at the end of the 3 months.

Is this normal? The neg blood work, but positive biopsy?

Also In June I had a cbc...everything was okay. Also having the issues with possible fibroid and my GYN just so happened to do blood work, CBC included at the time I had the blood done for the Celiac. My hemoglobin and hematocrit are low. Much lower than they were in June. The GI said I was iron deficient and told me to take an ovc iron supplement 3x a day....He also told me that people with Celiac do suffer from anemia. My GYN calls this week, telling me I am SIGNIFICANTLY anemic and wants me to really think about having a hysterectomy asap. I am a heavy bleeder...always have been...but I don't want to rush into surgery if the anemia is possibly related to being a Celiac....but I don't know if I truly have Celiac since the blood was negative. I am tired all the time, and my hair has been falling out like crazy.

Any opinions/advice/info would be appreciated. This is just too much at one time to handle. I have been mostly WG free since last week, and I can say I don't feel quite as bloated/gassy ....could be in my head..... ??????? :blink: I am just confused...and lost.

Thanks

J
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#2 jester

 
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Posted 22 September 2010 - 10:20 AM

From what I have read and others have said, it's entirely possible for the blood work to show negative but the biopsy to be positive, and so far as I know the biop is the "gold standard" for diagnosing celiac, regardless of the blood work-up. If I were you I would consider myself a celiac, or at least gluten intolerant. Also it could take months for you to really see changes on the diet, your body takes a while to heal.

The anemia is a strong sign of celiac, I think - and if I were you I'd be hesitant to rush into the surgery without everything else on top. I hope others have advice for you, but trying a completely gluten-free diet and seeing how you do does sound like your best bet (with iron supplements) for now.

I'm so sorry you have all of this at once and I hope the diet helps.
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#3 mushroom

 
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Posted 22 September 2010 - 11:52 AM

Biopsy trumps blood work, every time. You are probably celiac, especially with your history although I believe some other conditions can affect the villi. Improvement on the diet will be the verification.

I agree with Jester, do not rush into hysterectomy. You may even notice a change in your period bleeding once you are fully gluten free. Many of us have issues with menstruation, fertility, PCOS, which resolve after gluten is removed. But I am concerned about the advice of OTC iron. I don't know much about it because I was not deficient, but I understand that it is hard to get iron into one's system, especially a celiac-compromised system. Lots of people have iron infusions for this reason. I hope someone else will come on and advise you about the best way to get your iron.

Anemia will make you tired, and hair falls out with celiac disease. Has anyone checked your thyroid function? This is often out of whack in celiacs and can also make you feel tired. Did your GI check your nutrient levels, like Vit. D, B12, folate, zinc, potassium, magnesium, also??
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#4 ravenwoodglass

 
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Posted 22 September 2010 - 01:46 PM

I agree with the others. Do not rush into the hysterectomy, they can not be reversed. Give the diet a while to help you heal and absorb iron and to let your hormones stabelize. Did you tell your OB/GYN that you are a diagnosed celiac? That might change his mind about rushing into the surgery. It is a well known medical fact that celiac undiagnosed impact not just your iron and B12 and other nutrient levels but also it impacts the female reproductive system.
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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)

#5 jamillusions

 
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Posted 22 September 2010 - 02:10 PM

Thank you both.

Yes I had read somethings about the biopsy being the gold standard in diagnosing. I just totally wasn't expecting it. and my GI wasn't all that informative about it, but the basics. He said the villi were damaged but not badly ?? I like to be educated...lol. Most doctors don't do a lot of that, your in and out. This is life changing.

I am 40, is it normal to develop Celiac at my age. Also my primary doctor, before I had the blood work done said that he didn't think that I was Celiac because I was over weight ????

You know they all say something different. Doctors frustrate me. I mean the GI wasn't concerned with my iron levels, just to take the iron ITC...which makes me sick in my stomach. He didn't want to do blood work for any other levels. It was an after thought on my part, that I should have asked him to. Then the GYN made it sound like I needed a freaking blood transfusion soon....when honestly my levels are just right below the norm.... ?????? Doctors amaze me. That is why I am researching myself and trying to get all the info I can before I go to her. We had been talking about the surgery, I do have miserable periods...and like you said Mushroom, it could get better, honestly it has been the worse it has been, the past few months. Oddly I have been rx ed with PCOS and Insulin Resistance. I suffer from hypoglycemia and terrible anxiety....I had a shrink a few years back that said maybe I had food allergies, I never listened. Could be part of my whole problem.

Anyhow, thanks again. Very happy I found this forum. My husband is supportive, but others just don't get it.

I have an appointment with my general doctor as well as the GYN in the next 2 weeks, so I am definitely going to have them check my other levels. Oh btw...my thymine is fine. I also have an appointment with a Dietitian, hoping that will help as well.

Again many thanks, I appreciate the support.
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#6 Lisa

 
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Posted 22 September 2010 - 02:13 PM

Good advise from the others. Unless there are other indications that might warrant a hysterectomy, I would be a quick learn and go gluten free.

This place will be invaluable to you in the next few months. We're here to help. ;)
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Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#7 mushroom

 
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Posted 22 September 2010 - 02:29 PM

You can develop celiac at any age, from infancy to 95. Also, just as many celiacs are overweight from insulin resistance as are underweight from lack of nutrition. Celiac predisposes one to Type II diabetes. Most doctors have an image of a celiac as gaunt, underweight and you can't be any other way. Anxiety is another feature of celiac for many. So yes, it sounds like you are one of us :)
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#8 jamillusions

 
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Posted 22 September 2010 - 03:53 PM

Thank you all SOOOOO MUCH!

and yes I am going to be needing this forum very much! I have many questions~!!! :unsure:
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#9 gf_soph

 
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Posted 22 September 2010 - 09:17 PM

Some of the best advice I've seen is to get copies of all medical tests, especially blood tests. You can then post your results (make sure you include reference ranges as these vary from lab to lab), and get feedback from people here who REALLY know what they are talking about. A classic one is that the accepted minimum level for B12 is far too low, so drs will tell people they are fine when really they are low enough to be ill. It's happened to me, and friends of mine. At least I know better now!

I've had problems with my iron for years now, have needed injections as I can't tolerate iron pills, tried for years! Low iron can make you feel very very ill, but can take a very long time to bring back to normal, especially with you being newly diagnosed your villi will still be in poor shape. I have never had significant bleeding and I skipped a lot of periods for about a year, even so my levels didn't budge without injections. If you're a heavy bleeder and already anemic, I think you will find it VERY hard to get your levels better with OTC medication.

You should find out at least your circulating iron and your ferratin, which is your stored iron. Looking at these together should help you make a decision about how aggressively to treat it. For myself, I am looking into infusions now, as I have had so many injections that the muscles are starting to complain. They can give you 6-12 months worth of iron in one go, it's a hassle, but I think it will be a good option for me at least.

Hope you find a decent doctor!
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#10 jamillusions

 
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Posted 23 September 2010 - 05:13 AM

Thank you gf_soph!

I don't have my current labs in front of me. All I know are my hemoglobin and hematocrit levels that the nurse gave me over the phone from the GYN.

In June when I had a CBC my hemoglobin was 11.6 this time it was 11 and my hematocrit was 36.1 and is now 33.2. Which seems like a pretty significant drop over 3 months to me. No one has tested my iron yet...nor b-12 etc. I am going to insist to my general doctor when I go the 1st week in Oct to do so.....although he is extremely old school and doesn't think I could be a Celiac because I am over weight, nor does he believe in insulin resistance...which I clearly suffer from.

I am thinking perhaps I should find GI that specializes in Celiacs...??? I also have an appointment with the GYN again. I am a heavy bleeder, possibly endo...never diagnosed, and now possible fibroids. This past summer my periods have been out of control, I had also cut out meat and diary from my diet for 4 months in the Spring...thinking that may help stomach problems and high cholesterol. I am going to say since the end of Spring my hair has been shedding like crazy, and my stomach felt better for a while when off the meat and diary, then all of the sudden I was having pain, back to the bloating and gas....and that is when I had went to the GI...which lead to this.

I am just overwhelmed. I hate not having information, and then getting different information from each doctor, just leaves me confused. The anemia has me freaked out. Anyhow, I could go on and on...I too hope to find answers as well...thanks again for your input. It is much appreciated.
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#11 mushroom

 
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Posted 23 September 2010 - 11:38 AM

I am thinking also that you need a doc who is more knowledgeable about celiac who could give you some assistance in better nutrition to make you well, rather than offering you surgery to make you sicker (not that surgery sometimes isn't actually necessary, but you need to be sure). I don't know where you live, but contact your local Celiac Society and they might give you some help in locating someone.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#12 gf_soph

 
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Posted 23 September 2010 - 09:21 PM

I've had the old but well meaning dr before, he almost got me landed with neurological damage from low B12 - and that's the opinion of a heamatoloist I saw later on who was horrified. You are unwell, and you need a doctor who you can trust, and who knows what is going on. I woudn't even be on the gluten free diet if it wasn't for a chance meeting with a well informed doctor.

Not knowing that celiacs can be overweight is bad, and not 'believing' in insulin resistance is just stupidity. Get your medical records and take them elsewhere! You can post on the doctors section and ask for any knowledgeable drs in your area, or ask your local celiac society.

Without knowing the reference ranges it's hard to comment, but the fact your levels are dropping isn't good. At least your gyn can give you copies of your blood tests and you may be able to discuss the anemia and treatment options with her. Do you have the option of going on the pill or something else to control the bleeding? It seems like it would be good to stop the blood loss until your iron is higher, I skipped a lot of periods for a while for that reason, and they weren't even that heavy.

With insulin resistance and heavy bleeding, has your dr looked in to PCOS? My dr had that in mind for me for quite a while, you can get your hormone levels tested to give you an indication.

I should mention that you should get full iron, b12 and folate all tested at the same time. They can all cause anemia, but there is a complex relationship between b12 and folate such that you shouldn't supplement one without knowing the other is ok.

Hope you get someone decent soon to get all this sorted :)
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#13 jamillusions

 
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Posted 24 September 2010 - 05:44 AM

Thanks mushroom yes I think so too. I do have an appointment with a dietitian next week, going to see if she can point me in the right direction. I have been gluten-free starting this past Monday.


Thanks as well Soph. Yes I am well aware I am going to have to find a better doctor. This has all been thrown at me within the past 2 weeks. So I am extremely overwhelmed. And all that I have read on here is just overwhelming me more.

I have been talking to my GYN for about a year now regarding the hysterectomy. I have terrible periods. along with mega blood loss, I have lots of pain. So that was just not thrown out there just because of the anemia, I think she believes from just viewing my results and not knowing completely of my possible celiac rx, that it is occurring from my periods and possible fibriods (which were found on a CT scan I had in June, going for an ultra sound next week for conformation) along with undiagnosed endo. I am terribly frustrated and have been for years with doctors. I was diagnosed with PCOS by my endocrinologist in 2005. My testosterone levels were very high and I was put on metformin. About 2 years ago, my sugar was crashing all the time, my levels had returned to normal, so I discontinued the metformin, endo was fine with that and my testosterone continues to be in the normal range......????? So now she says I am insulin resistant/metabolic syndrome... My thyroid is always normal.

And yes my general doc is an idiot...I have an appointment with my GYN Oct 6....I am gathering all of my bloodwork and test from the GI and taking it to her, having her test all of the things you have mentioned. I cant tolerate the pill...so that is not an option to lessen the bleeding. I tried it about a year ago, was miserable on it, and still bleed heavy. If she provides me with no answers...and even if she does, I have started to look for doctors in my area that specialize in Celiac.

I have found it very hard unfortunately to find a doctor that will sit down and listen to you.

Oh on the hemoglobin and hematocrit ranges....

11.5 to 15 on the hemo, I am at 11

and

34 to 44 on the hema, I am at 33.2

So I am just below...

Thanks again.....and I too hope to get some answers or more understanding of all of this in the coming weeks.
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#14 nora_n

 
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Posted 24 September 2010 - 07:47 AM

Hypothyrodism is very very common in celiacs, as the thyroid antibodies are triggered by gluten.

Hypothyroidism alone causes heavy periods, and anemia.

There was even this mystery disease article in the bmj (british medical journal) about such a case, she had a hysterectomy because of heavy periods, and her heart stopped during the surgery and so on beause of severe hypo.

There is also smething called aquired von Willebrandt syndrome caused by hypothyroidism, and the solution is simply to take a high enough dose of thyroid meds so the clotting time is normal and the clotting factors work correctly. These patietns need to take a high dose of thyroid meds, and have a note from the hematologist that says so. Very often thyroid patietns are kept under-medicated, because doctors are so afraid of low TSH...so lots of themhave way too heavy bleedings.

the high cholesterol is a give-away, this is simply a hypo symptom. In the old days they used to use the cholesterol test to find hypothyroidism.
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gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.
daughter officially diagnosed celiac and casein intolerant.
non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5
Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet
Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

#15 jamillusions

 
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Posted 24 September 2010 - 08:40 AM

Thank you for responding. I have my thyroid levels tested every 6 months because of the PCOS, and they are always normal.
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