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Borderline Results Again. Should I Get Biopsy?

FlourShopGirl

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FlourShopGirl Explorer
FlourShopGirl
Posted

Hello everyone! I am new and I am soo glad I found this board.

I've have been labeled with IBS for years. I always thought it to be something more. Few years ago I had the bloodwork done and came up with one test borderline. I went to a gastro doc who said "You are not skinny or irish" and I left with the IBS label. Another year went by, I tested again all within normal ranges.

So skip to now, 2 years later I get restested and low and behold I come up borderline again. I have diarrhea and a lot of gas. About 2 years ago, I started in with depression and anxiety. I have brain fog and mental confusion and what seems like OCD at times. I thought it was horomonal but I am not sure.

I honestly feel confused and somewhat scared. I've been battling with the IBS for so long it's a way of life for me. Anyone else with borderline results with any advice? I'm not sure if I should get the biopsy done.

I appreciate any answers- thank you. :)

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Lisa Mentor
Lisa
Posted
Hello everyone! I am new and I am soo glad I found this board.

I've have been labeled with IBS for years. I always thought it to be something more. Few years ago I had the bloodwork done and came up with one test borderline. I went to a gastro doc who said "You are not skinny or irish" and I left with the IBS label. Another year went by, I tested again all within normal ranges.

So skip to now, 2 years later I get restested and low and behold I come up borderline again. I have diarrhea and a lot of gas. About 2 years ago, I started in with depression and anxiety. I have brain fog and mental confusion and what seems like OCD at times. I thought it was horomonal but I am not sure.

I honestly feel confused and somewhat scared. I've been battling with the IBS for so long it's a way of life for me. Anyone else with borderline results with any advice? I'm not sure if I should get the biopsy done.

I appreciate any answers- thank you. :)

First of all Welcome,

This is a great place!

Second, for any doctor (a GI) to dismiss Celiac because you are not skinny or Irish, need to find a new profession.

It would be interesting to know what your test actually were, with a definition of "borderline".

If you are not concerned about having a doctor's diagnoses, I would recommed that you try the diet for a months time. If you do see improvement in your symptoms, a positive dietary response is also considered a diagnosis. Some people do not care about being diagnosed, but feel better not eating gluten.

Phyllis28 Apprentice
Phyllis28
Posted

It is your choice to try the diet and skip the biopsy or have the biopsy.

In order to have a biopsy for celiac you need to continue eating gluten. One advantage to the biopsy is that the doctor can check for other problems while doing the endo and possibly do a colonoscopy at the same time.

I never had a biopsy, a positive response to the diet was all I needed. It is my opinion, that if a gluten free diet works for you, you will not be willing to subject yourself to eating gluten just to get a diagnosis.

I agree with Momma Goose, the doctor should not have dismissed Celiac just because you are not Irish or skinny.

Ursa Major Collaborator
Ursa Major
Posted

Oh, not another ignorant GI doctor! They really should know better.

At least 40% of people with celiac disease are overweight, because unexplained weight gain can also be a symptom of malnourishment due to malabsorption. The reason is, that your body will try converting everything it can manage to absorb into fat, because you really are starving!

And IBS is a SYMPTOM, not a valid diagnosis by itself. If the bowels are irritated, something must be causing it. Any doctor who will just give a diagnosis of IBS is either too lazy to keep looking, or just plain ignorant (or both).

Every one of your symptoms could be caused by celiac disease. With what they called borderline testing (it happens that doctors will call positive tests borderline, by the way) and all those symptoms, it is very likely that you have celiac disease.

It is your choice if you will push for a biopsy (the rate of false negatives is high, because they really are hit and miss), or just try the diet and see if you will feel better.

Either way, if you do the biopsy, you ought to try the gluten-free diet, no matter what it will show.

vulpess Newbie
vulpess
Posted

So are mental fog, OCD behavior, and forgetfulness possible symptoms? I have those same things, and I'm going to get tested in March. Does anybody else have these type of mental symptoms and have had a gluten free diet work for them? Good luck!!!

Lisa Mentor
Lisa
Posted
So are mental fog, OCD behavior, and forgetfulness possible symptoms? I have those same things, and I'm going to get tested in March. Does anybody else have these type of mental symptoms and have had a gluten free diet work for them? Good luck!!!

"Brain fog" is a very typical symptom. It's due to malabsorption resulting in vitamin and mineral deficiencies. Please remember to EAT a full GLUTEN diet before testing.

FlourShopGirl Explorer
FlourShopGirl
Posted
  • Author
So are mental fog, OCD behavior, and forgetfulness possible symptoms? I have those same things, and I'm going to get tested in March. Does anybody else have these type of mental symptoms and have had a gluten free diet work for them? Good luck!!!

I don't know if the OCD is but the depression, anxiety and brain fog seem to be. I have noticed some changes in my mental status the past 2 years. I considered myself an extremely sound person and I honestly think I could be in a mental hospital at times now which really, really upsets me. I'm not sure if it's gluten related or not. I've been searching for answers and I think getting the biopsy scares me since it might show nothing and I will feel like I am just losing my mind. :(

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vulpess Newbie
vulpess
Posted
I don't know if the OCD is but the depression, anxiety and brain fog seem to be. I have noticed some changes in my mental status the past 2 years. I considered myself an extremely sound person and I honestly think I could be in a mental hospital at times now which really, really upsets me. I'm not sure if it's gluten related or not. I've been searching for answers and I think getting the biopsy scares me since it might show nothing and I will feel like I am just losing my mind. :(

I feel the same way. About 4 years ago, I became really scatterbrained, lost short-term memory, brain fog, and lost a lot of weight. My doctor just told me I was anorexic/hypochondriac, but now I've decided to get help. If you've had a sudden change in your mental state, something must have happened. If the gluten test/diet doesn't work out, then keep trying to find answers!! Don't give up until you feel like yourself again. Have you talked to someone about any hormonal problems? I used to have horrible hormonal swings until I got on the pill. Keep trying - I know you'll find the answer!

FlourShopGirl Explorer
FlourShopGirl
Posted
  • Author
I feel the same way. About 4 years ago, I became really scatterbrained, lost short-term memory, brain fog, and lost a lot of weight. My doctor just told me I was anorexic/hypochondriac, but now I've decided to get help. If you've had a sudden change in your mental state, something must have happened. If the gluten test/diet doesn't work out, then keep trying to find answers!! Don't give up until you feel like yourself again. Have you talked to someone about any hormonal problems? I used to have horrible hormonal swings until I got on the pill. Keep trying - I know you'll find the answer!

I've been to three Endocrinologists. All got me nowhere basically besides one woman did bloodwork and found out my DHEA-S was evelated. They did another test (24 hour urine cortisol) which was normal.

I feel very lost. I could be allergic to dairy and not just wheat. All I know is for 15 years I have had the worst stomach. I eat out and barely make it home to the bathroom and obviously anxiety plays a part since if I am not close to one my stomach hits me. I can't eat out with couples far away or even be in the same car, take boat rides or stand in line for a while because my anxiety or my stomach hits (which is one in the same).

I feel like doctors want to give bandaids out... here's zoloft seems to be the top answer for me. I agree, keep searching.

Does anyone know if the biopsy is a guaranteed result? I am nervous on getting that too- do you feel anything?

vulpess Newbie
vulpess
Posted
I've been to three Endocrinologists. All got me nowhere basically besides one woman did bloodwork and found out my DHEA-S was evelated. They did another test (24 hour urine cortisol) which was normal.

I feel very lost. I could be allergic to dairy and not just wheat. All I know is for 15 years I have had the worst stomach. I eat out and barely make it home to the bathroom and obviously anxiety plays a part since if I am not close to one my stomach hits me. I can't eat out with couples far away or even be in the same car, take boat rides or stand in line for a while because my anxiety or my stomach hits (which is one in the same).

I feel like doctors want to give bandaids out... here's zoloft seems to be the top answer for me. I agree, keep searching.

Does anyone know if the biopsy is a guaranteed result? I am nervous on getting that too- do you feel anything?

I am farther behind in the testing than you are (I'm going to get my blood test soon), so I'm not incredible knowledgeable about the testing, but I've read post of people who got negative biopsy and still benefited greatly from the gluten/dairy free diet. Take a look at the topic entitled "Maybe I Am Just A Hypochondriac?" (It's three pages back in this forum)

I'm not really nervous, but I'm really action-oriented and I always feel better when I've got a written plan:

1. Food diary (to notice trends in what makes me sick and what doesn't)

2. Doctor's visit in a month: Blood tests and evaluate food diary (don't know how this will go)

2. Over the summer, elimination diet (I'm a college student, and can't do this diet at my dorm) Elimination diets basically involve eating only non-allergenic foods for a week to cleanse your system, and then introducing possible allergens every once in a while. If you get sick, there's your answer. I'm really interested to see how gluten and dairy affect me.

If you are really nervous about the biopsy, you could try an elimination diet or gluten/dairy free diet for a while instead to see if it helps. Most people on the forums seem to get better after a week or two, or even a couple of days.

ravenwoodglass Mentor
ravenwoodglass
Posted
Does anyone know if the biopsy is a guaranteed result? I am nervous on getting that too- do you feel anything?

No it is not a quaranteed result, although some doctors will insist it is. The biopsies are hit and miss, you have 22 ft of small intestine and if the right area is not biopsied, or not enough are taken celiac damage can be missed. There are also things that are gluten related that the doctor may see and pronounce as your problem, like ulcers and EE that are gluten related but not always recognized as such. A positive biopsy is conclusive but a negative is not, regardless of the results of the biopsy you should always give the diet a really good shot.

Also you have to be on a full gluten diet for at least 3 months prior to the biopsy. If you have been gluten free for any length of time and you are sensitive to gluten this can be a very painful time. If you have been gluten-free and are doing a challenge for the sake of a hit or miss biopsy when you get very ill, which you most likely will, be sure to let the doctor know. Intelligent doctors will stop the challenge and diagnose you at that point.

Personally I believe doctors do these backwards, IMHO they should prescribe the diet FIRST and then if symptoms are not resolved after 3 or 4 months then perhaps an endo should be done to rule out other problems.

Ursa Major Collaborator
Ursa Major
Posted
So are mental fog, OCD behavior, and forgetfulness possible symptoms?

Yes, absolutely! Those are VERY common symptoms with celiac disease. Not only those, but depression, schizophrenia and bi-polar as well as AD(H)D can be caused by celiac disease.

Any amount of mental problems could all be due to celiac disease, as well as joint and muscle pain, neuropathies, psoriasis, eczema, 'growing pains' (there really is no such a thing) and nutritional deficiencies like low iron (anemia), vitamin D, B vitamins (especially B12), which can all cause weakness and mental problems.

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