Beyond Confused! Help Plz!

[hspichke]

Okay, lets just start from the beginning. I have had diarrhea issues for the last 3 or 4 years (along with other symptoms) and I have been on the hunt for a diagnosis so I can start feeling better. I have had my symptoms blown off by numerous Drs and it seems I am getting close to a diagnosis but I am so completely confused at this point. I will start with a list of symptoms, severe diarrhea, stomach cramps, endometriosis, hair loss, severe blistery itchy skin rash on fingers and elbows (Have an appt w a Derm on Jan 6th), extreme fatigue, fevers, sweating, tremor, joint pain in knees, bad "growing pain" feeling in thigh bones almost every day, headaches, mouth sores, nose sores. I think that is it... Anyways I will start with almost 3 years ago after my son was born....I was feeling ill and finally decided to be seen, he diagnosed me with temporary hyperthyroidism from the delivery of my son and said it would go away. After 4 months it did go back to normal but I still had symptoms. They would sometimes be horrible, sometimes be bearable but I dealt with it. I got pregnant then again with my son who is now 9 months old and it seems after him everything got MUCH worse. I had stomach pain and diarrhea and fatigue the last couple years before that but I just dealt with it. After having my 9 month old I went to the Dr in July complaining of most of the symptoms I listed above. She told me "since you are having symptoms in numerous systems of your body it is all in your head" and sent me on my way. I had a hard time believing this but I said okay and went home. About a month later I was having a lot of pain in my left forearm and ended up going to the ER, after an ultrasound the Dr said "we THINK you have a blood clot", and suggested I go back to my Fam Practice Dr to see if there could be a clotting issue. After doing a few blood tests one was positive, Antiphosphilipid Antibody Syndrome and she told me to take aspirin daily and then come back in 4 months for another blood test since it was a weak positive and there needs to be two positive tests to confirm. I will be getting this test again next wk. She told me she would be sending me a package of info about the disorder and when I got it I saw that there was a tie between that and Lupus. I researched Lupus and noticed I had NUMEROUS symptoms so I contacted a new fam practice Dr to discuss it. He thought it was possible but ran blood tests and since my ANA was negative he said it was not Lupus. I guess 95% of people with Lupus have a positive ANA. Over the last 2 months my diarrhea issues have become unbearable. I sleep on the bathroom floor and take Percocet for pain and that doesn't even help. I am miserable. I went to my OB/GYN since I have endometriosis and asked if it could have spread to my intestines, she said this was possible and sent me to a GI Dr. He ran a few blood tests and they came back showing inflammation.. I will post the copies here....

C reactive protein - 5.9 and then he called today saying that he "missed" this.. t-Transglutaminase (tTg) IgA was 57. He has originally suggested that my endo probably did spread to the bowel, however now said something about celiacs and told me to come in for an appt to discuss. I have an appt Jan 10th but in the mean time my OB/GYN wanted to start me on Lupron injections to shut down my ovaries and put me into menopause (it is a dangerous drug) to stop the endo from spreading further. I am a 24 yr old woman with 2 small children and do NOT want to go through menopause and risk side effects if this is not necessary. I also am waiting to get into the Lupus Clinic at University of Minnesota Medical Center. HOWEVER, I see Celiacs symptoms are similar to those of Lupus and I think this may have been my issue all along. Does anyone have any advice, suggestions, insight? Anything would be appreciated I am BEYOND STRESSED!!! Thanks!

[ravenwoodglass]

Childbirth is often a trigger for celiac in women. You do sound like one of us. This is only my personal opinion but I would wait on the drug that will send you into menapause. If your GI didn't do a full celiac panel along with a total IGA then call the office and see if you can pick up a lab slip Monday to get that done. If you are going to agree to an endo then don't go gluten free yet. Do keep in mind that celiac testing has a high false negative rate so do give the diet a good strict try even if the other celiac tests come back normal. Use your time waiting to learn as much as you can about what you need to do to keep you strictly gluten free. You're in a great place for that. Welcome to the board and ask any questions you need to.

Also my humble opinion- an OB/GYN who would want to throw a 24 year old woman into menapause who hadn't done extensive testing (CT or laproscopic exploration etc) to be SURE that what that person is dealing with is severe endometriosis is not the greatest doctor. I had severe endometriosis found on a laproscopic surgery when I was in my late 30's. It was so extensive that my 1/2 hour surgery became a 3 hour one so he could free up my intestines and other organs from the adhesions. He never even remotely suggested that I take or do anything that would 'sterilize' me even at that age.

[pricklypear1971]

Yes, my advice is to push hard on getting Celiac testing.

You have endometriosis, which is an autoimmune disease (I probably have it too, my tests were cancelled because I got pg). If you have one you are more likely to have two. Or more.

I would try other things before Lupron, also, in your situation. Although a life of pain is no way to live - but are there any guarantees the Lupron will stop the pain? Have they done more testing to see if the endo is indeed spreading?

[IrishHeart]

I agree---Push for a FULL Celiac panel.

Pregnancy is often a trigger for Celiac.

Your symptoms are very similar to mine ---but I could never carry to term and had multiple miscarriages and failed fertility treatments. That was in my 30's. Endometriosis, cysts, fibroids, heavy bleeding, blah blah blah . I had a painful, dreadful early menopause and NOW I know all that horror (plus many more symptoms )was tied to Celiac ALL THIS TIME. It just got worse and worse ---and by the time of my 50th birthday, I was extremely ill and in serious pain. It took me 3 years to figure it out.

You do not need that!!

Do not trust your care to ANY doctor that tells you symptoms "are in your head." That's a disgrace.

[hspichke]

I had a laproscopy in 2005 which confirmed endometriosis, but the reason that the OBGYN suggested it now was because the bowel issues. She didn't go in and look! I also thought that this was extreme especially since I cannot have hormone replacement therapy if she wanted to do a hystorectomy after the Lupron (which she suggested). That is why I am glad my Dr called back. I don't know what a full celiac workup includes but I will post my full results on here. I am new to this so I don't quite know what I am looking for.

All my stool samples were normal.

Here are my results of all the blood tests, as well as any that were high or low.

C reactive protein 5.9 High

Sedimentation Rate Westergren 1

Protein, Total, Serum 6.9

Albumin, Serum 4.2

Bilirubin Total 0.2

Bilirubin, Direct 0.08

AST (SGOT) 20

ALT (SGPT) 16

Alkaline Phosphatase, S 89

Glucose, Serum 80

BUN 7

Creatinine, Serum 0.66

BUN/Creatinine Ratio 11

Sodium, Serum 139

Potassium, Sodium 3.8

Chloride, Serum 103

Carbon Dioxide, Total 26

Calcium, Serum 8.9

Hemoglobin 12.7

Hematocrit 38.5

MCV 79 Low

MCHC 33

MCH 26.2 Low

RDW 15.1 High

Platelets 333

Neutrophils 43

Lymphs 33

Monocytes 20 High

Eos 3

Basos 1

Netrophils (Absolute) 2

Lymphs (Absolute) 1.5

Monocytes (Absolute) 0.9

Eos (Absolute) 0.2

Baso (Absolute) 0.0

Hematology--

Immature Grans 0

RBC 4.85

WBC 4.7

Immunoglobulin A, Qn, Serum 155

t- Transglutaminase (tTG) iGa 57 High

(Then at the bottom it states, Tissue Transglutaminase has been identified as the endomysial antigen. Studies have been demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitivity eneropathy)

Whew, that was a lot to type! Hah. I also have another question, at random times (mostly during pregnancy) I have had dangerously low Potassium... could that be related? Thanks everyone for the support and insight!

[Skylark]

I've been on Lupron twice. It is a godsend for endometriosis and I wouldn't call it dangerous. The surgery is worse - I had that too - lupron worked better for me. You only take lupron for six months at a time and the endometriosis mostly goes away for a few years, sometimes permanently. You can get pretty obnoxious hot flashes but that's about all.

You do need to be sure that the issue is endometriosis, though to be honest I think trying lupron and seeing if the pain stops is far safer than a laproscopy that requires general anesthesia! Don't let her do a hysterectomy. I take it you're on oral contraceptives and they're not working very well to control it? If not you should get a 9 week on/1 week off oral contraceptive regimen first. You need those ovaries.

You're probably celiac, though an anti-EMA or anti-DGP as confirmation of the TTG would be good. Yes, low potassium goes with celiac malabsorption.

[hspichke]

I just have read horror stories and heard really bad things from friends who have used Lupron, that's why I was nervous. I can't take anything with estrogen due to a clotting disorder and migraines w/aura (apparently it increases stroke risk?) But I did have the Implanon which gave me my period for 6 months non stop so I got it taken out, now I am on the mini pill. But it doesn't regulate my period or help with the pain. Sometimes I have my period for a month then it will go away a wk and come back, sometimes not for 3 months, it is extremely irregular.

I will call my Dr monday and ask for those tests. I do not go back until Jan 10th, but if there is labs to do he should be able to order them before I go in. Thank you!

[pricklypear1971]

Have you tried natural progesterone cream? Would that be ok with the clotting disorder?

Dr. John Lee wrote a few books on its use. I used it after I had my son, approved by my ob/gyn who was sure I had endo.

It helps be balance out my cycles, even on gluten. It can take few months but it got me there.

Also, have they tested your thyroid tsh and TPO antibodies?

[hspichke]

Have you tried natural progesterone cream? Would that be ok with the clotting disorder?

Dr. John Lee wrote a few books on its use. I used it after I had my son, approved by my ob/gyn who was sure I had endo.

It helps be balance out my cycles, even on gluten. It can take few months but it got me there.

Also, have they tested your thyroid tsh and TPO antibodies?

I haven't been told anything about this. I will ask my obgyn when I call nxt wk! Thanks!

And my tsh was low a few months ago, so my Dr had me do the radioactive thyroid scan (I don't know the specific name of the test) and it was normal so he said that my levels should go back to normal. I have to get a blood test for that nxt wk to make sure it is normal again as well as a blood test to confirm my APS.

I'm not sure about TPO, is that thyroid related also? If so, all my other thyroid tests were normal besides the TSH.

[pricklypear1971]

TPO is a test for autoimmune thyroid antibodies. It is usually not considered a "normal" thyroid test. Get a copy of your results and see if it was run. If it is high, you have Hashimotos Disease and THAT is supposedly caused by Celiac.

Not all ob/gyn's will support natural progesterone supplamentation. I suggest arriving armed with info. Get one of Dr. Lee's books. You do need to be careful, though, because of your clotting disorder. I do not know if they are contradictory.

[hspichke]

TPO is a test for autoimmune thyroid antibodies. It is usually not considered a "normal" thyroid test. Get a copy of your results and see if it was run. If it is high, you have Hashimotos Disease and THAT is supposedly caused by Celiac.

Not all ob/gyn's will support natural progesterone supplamentation. I suggest arriving armed with info. Get one of Dr. Lee's books. You do need to be careful, though, because of your clotting disorder. I do not know if they are contradictory.

My clotting disorder hasn't been confirmed yet, I will need to wait until my next blood test but it may not be an issue. As for the book, I will definitely look into that! I will also ask about that test. Thank you so much

[Skylark]

Yeah, clotting disorder and migraine with aura definitely means no combination contraceptives. It's really bum luck that the pregnancies didn't make it go away. I had an aunt with terrible endometriosis but it went away after her first pregnancy. I never had kids so I've been on combination contraceptives for many years to keep it at bay.

There are a lot of odd health problems that go away gluten-free if you're celiac. Maybe it will turn out that your endometriosis is celiac-related.

I do see a lot of horror stories about lupron out on the web. For me, all it did was give me hot flashes and a little fatigue and take away the pain. The first time I was on it for six months and pain-free for many years. Totally worth it! The endometriosis eventually came back mimicking a bladder infection. The second time the lupron gave me fierce hot flashes that messed up my sleep but I stuck with it for four months and the pain went away again. Still worth it, although those were some pretty intense hot flashes the second time around.

[Di2011]

I just responded to your DH photo-related post.

Those hands are much like my hands - please post to the DH thread. I am not diagnosed DH or celiac but I think your DH is the most likely symptom to be diagnosed without any more complications. In the DH thread send any more pictures, symptoms etc etc and let us know when it started, got worse etc. DH diagnosis is so so much simple to having endoscopty etc

There are only two things that can happen: I have something that is not or in addition to DH or you/I have something else we both need to know about.

[hspichke]

Thank you all for the advice. I talked to my Dr and he set me up to get the full Celiac panel tomorrow morning and should have results by the 27th or 28th then I will see my Dr, and if they still think it is Celiacs then I will see a specialist and get the endoscopy. My youngest son (9 months now) has had 2 upper endoscopys so I kind of know what to expect but still a little nervous! I do have one question.... My ttg iga was 57, what are the chances of that being positive without it being Celiacs? Thanks