Went In For Laparoscopy For Suspected Endometriosis...well That Wasn't It!

[emilee89]

Hey everyone! I'm not sure if I have ever posted on this forum before but I have an interesting dilemma and desperately need insight. My history:

I have had ovarian cysts in the past. I have had excruciating, burning, nagging pain in my left and right lower abdominal quadrant for years now. My gyno decided it would be beneficial to do a laparoscopy yesterday to find what we both suspected as endometriosis. However, when I woke up she said that they did not find any signs of endometriosis but that my small intestine was distended and could be irritated. I began to cry because I was SO hopeful this would be a fix for me. My doctor immediately suggested food allergies or an intolerance as an explanation for my symptoms which include:

-severe constipation

-occassional diarrea

-migraine headaches

-very thin hair and nails that peel off

-excruicating stabbing stomach pain

-almost constant gas

-extreme nausea/vomiting (my dad calls me "puker")

-overwhelming fatigue and joint aches/lower back pain

-occassional blood in urine and mucus in stool.

As you can see any of this could have been caused by endometriosis OR a gastrointestinal problem. When endometriosis was ruled out I was absolutely devestated. Although I'm SO happy that I don't have fertility problems, I am also frustrated and need answers. I was blood tested for celiac a few years ago and it came out "inconclusive". My doctor said I most likely have IBS, which does not feel very likely to me. My grandmother had celiac disease but we never really talked about it/if it "runs in the family" or not.

I am starting to feel crazy and hopeless that this will ever change. If you have any advice for me for the next step, I would be SO grateful. I am only 19 and have so much trouble even going to dinner with friends or on a date. I just want to feel normal.

Thank you so much and I respect everyone's opinion so feel free to give me any suggestions that you feel will be useful.

Emilee

[SarahJimMarcy]

It's really hard to traipse from one specialist to another, but I think your next step would be seeing a GI doctor. They could re-test you through a blood test for celiac then move on to an upper endoscopy if needed. Your symptoms are all symptoms my daughter had, and she was diagnosed (after many, many, many different doctor appointments) 4 months ago. We went gluten free. She is now 14 and feeling much better. Keep looking for answers. It's a lot of work but feeling better will be worth it!

[rosetapper23]

I agree that you should be retested for celiac--remember, celiac has to be triggered, and you may not have had it a few years ago. It's also possible that you have gluten sensitivity, rather than celiac, so even if the tests come back negative, you might consider trying a gluten-free diet to see if it alleviates your symptoms. By the way, although you don't have endometriosis, which can cause infertility, celiac can also cause infertility. Oftentimes women who can't become pregnant find out that they have celiac. I personally suffered from infertility because of celiac. So....definitely get retested and take it from there. By the way, many of us feel that IBS is a symptom and not a disease--it's a common cop-out by doctors when they don't know what is ailing someone. Hope you get some answers soon!

[ravenwoodglass]

If a doctor says the celiac panel is 'inconclusive' to me that means a couple things. It might mean that only one of the tests is positive. Some doctors think they all need to be positive to be celiac, which is not the case. It could also mean the tests were a low positive. Did you see the actual test results?

It would be a good idea IMHO to get tested again for celiac and then no matter what the test results are go gluten free for a few months to see if it helps. Since there is such a high rate of false negatives with testing a dietary trial is always in order.

[emilee89]

If a doctor says the celiac panel is 'inconclusive' to me that means a couple things. It might mean that only one of the tests is positive. Some doctors think they all need to be positive to be celiac, which is not the case. It could also mean the tests were a low positive. Did you see the actual test results?

It would be a good idea IMHO to get tested again for celiac and then no matter what the test results are go gluten free for a few months to see if it helps. Since there is such a high rate of false negatives with testing a dietary trial is always in order.

First of all, thanks to all who have responded, it means so much to me. I never actually saw the blood test results...my doctor (GP) called me and said things were inconclusive, so I chose to accept that as fact without any research of my own or futher questioning. Of course now I feel like an idiot for not asking him any questions!

Would it be useful to go back to my general practitioner or a gastro doctor?

Also, is celiac/gluten sensitivity hereditary?

Thank you for all of the advice! You are some awesome experts.

[rosetapper23]

Yes, celiac is definitely hereditary. My mother, uncle, aunt, son, daughter, and numerous cousins, nieces and nephews have it in my family alone. After I was diagnosed, I spread the word--and, lo and behold, a LOT of people in my family ended up having it. It makes family gatherings a very safe place to be, though, when it comes to celebrating with food. The "official" statistics state that 1 out of 22 people in a family will have it...but I personally don't believe these so-called statistics.

[ravenwoodglass]

Yes, celiac is definitely hereditary. My mother, uncle, aunt, son, daughter, and numerous cousins, nieces and nephews have it in my family alone. After I was diagnosed, I spread the word--and, lo and behold, a LOT of people in my family ended up having it. It makes family gatherings a very safe place to be, though, when it comes to celebrating with food. The "official" statistics state that 1 out of 22 people in a family will have it...but I personally don't believe these so-called statistics.

Yea everyone in my family was positive also...including my ex-husband. I think it is much more common than most doctors think because many of us think our tummy troubles are 'normal'. A lot of people self medicate with the wealth of 'tummy products' on the market and never get tested. My doctors told me for years I just had a 'nervous stomach' and taking multiple doses of immodium just to be able to leave my house was fine. They never put all the pieces together with my other issues like arthritis and migraines and told me I was just getting old, at 40. Doctors don't find celiac if they don't look for it and many don't so it is likely that once one celiac is found in the family there are many others who are also but haven't been tested.

[pain*in*my*gut]

I think "inconclusive" blood tests means that one of them was positive and at the very least you have gluten intolerance! Why on earth did that doc not follow -up on that "inconclusive" blood test? Good grief! You need to get those tests done again and see a GI for a scope.

By the way, I do have endometriosis. I have had it for 20 years (I am 38). I have had 6 surgeries for it, suffered for 5 years with infertility before I conceived my one and only child, and have since had 2 miscarriages. Endometriosis destroyed my ovaries and as a result I am now in Premature Ovarian Failure (also known as menopause)! I would much rather have Celiac disease than endo, as there is a fix for Celiac (don't eat gluten). There is no cure for endo. So YAY for no endo for you, hun!

[tarnalberry]

If a doctor says the celiac panel is 'inconclusive' to me that means a couple things. It might mean that only one of the tests is positive. Some doctors think they all need to be positive to be celiac, which is not the case. It could also mean the tests were a low positive. Did you see the actual test results?

It would be a good idea IMHO to get tested again for celiac and then no matter what the test results are go gluten free for a few months to see if it helps. Since there is such a high rate of false negatives with testing a dietary trial is always in order.

This exactly! You can request a copy of your old tests, but I'd also get new ones - from whomever you like, really, but you may decide you want a followup with a GI anyway.

[emilee89]

I think "inconclusive" blood tests means that one of them was positive and at the very least you have gluten intolerance! Why on earth did that doc not follow -up on that "inconclusive" blood test? Good grief! You need to get those tests done again and see a GI for a scope.

By the way, I do have endometriosis. I have had it for 20 years (I am 38). I have had 6 surgeries for it, suffered for 5 years with infertility before I conceived my one and only child, and have since had 2 miscarriages. Endometriosis destroyed my ovaries and as a result I am now in Premature Ovarian Failure (also known as menopause)! I would much rather have Celiac disease than endo, as there is a fix for Celiac (don't eat gluten). There is no cure for endo. So YAY for no endo for you, hun!

I'm so sorry that you have suffered so much with endo I was completely prepared to wake up and hear "You have endo!"...the severity of the pain just did not make sense to me as a gastrointestinal issue. I feel terrible that I was disappointed that there was no definitive diagnosis. However now I realize that I need to take action to make myself feel better, no matter WHAT the problem is. I am moving into my sorority house in a few weeks so I'm trying to get the ball rolling while I still can!

Also, have any of you noticed any improvement with hair/skin/nails after going on a gluten free diet? Other than my gastro issues my hair is by far my biggest insecurity. If someone only has an intolerance or sensitivity would it still cause damage to the villi?

I am asking so many questions!! Sorry!

[Thea-Bug]

I'm so sorry that you have suffered so much with endo I was completely prepared to wake up and hear "You have endo!"...the severity of the pain just did not make sense to me as a gastrointestinal issue. I feel terrible that I was disappointed that there was no definitive diagnosis. However now I realize that I need to take action to make myself feel better, no matter WHAT the problem is. I am moving into my sorority house in a few weeks so I'm trying to get the ball rolling while I still can!

Also, have any of you noticed any improvement with hair/skin/nails after going on a gluten free diet? Other than my gastro issues my hair is by far my biggest insecurity. If someone only has an intolerance or sensitivity would it still cause damage to the villi?

I am asking so many questions!! Sorry!

Emilee,

I second the suggestion above to get copies of your results from all of your doctors. It's so useful to be able to look back years later to piece together a puzzle (if necessary), AND you never know what a doctor may not be telling you, or may have missed. Unfortunately, it has happened to me too many times, so now I always get copies and I keep everything.

As for the hair/nails, yes! It's so much better now. However, I'm also taking B12, so I don't know if that's part of the difference. My hair and nails are growing at lightning speed now.

You mentioned some of your symptoms. I will say that my gas, headaches, diarrhea and nausea have completely gone away now. It's amazing what going gluten-free has done for me. You may find that that's the same issue for you. Whatever it is for you, I hope that you find your answer. Good luck to you in all of this!

Thea