Please Help!

[2BOYSMOM]

Help with symptoms and neg. labs!Hi, another newbie here with desperate need for help. Long story short....Dx 10 years ago with IBS, recently feeling more and more miserable. Severe headaches, abdominal pain and distention after eating, mouth ulcers, very gassy, off and on bouts constipation/diarrhea, parathesia, blisters on fingers, intolerance to heat, and sudden hypertension. Inability to lose weight even though exercising more and EXTREME fatigue. Ended up at doctors office because of blood pressure and went through all symptoms. The first thing he mentioned was celiac and then went on to others including adrenal issues. Just got blood work back and here are results. (does this look like complete celiac panel?)

Tissue Transglutaminase Ab, IgA 1.2 Reference <7 neg >7pos

Gliadin Peptide Antibodies, IgG, IgA 1 <19=neg >31 =pos

Gliadin Peptide Ab, IgA 6 <19 neg >31 pos

Reticulin Antibody IgA, Reflex <1.5 <1.5 neg

performed at ARUP lab in Salt Lake City, UTAH

The nurse said "everything is normal" except your ferritin level which was 13 with 10-291 being normal and my B12 was low (which I've been told for years). So where do I go from here because I feel anything but normal? Also all thyroid test were normal too. He did mention that if all of this came back negative, I should still go for endoscopy. Please give me your advice and/or opinion.

[melmak5]

It is possible to have a false negative blood work and still have celiac disease, which is why your doc is probably recommending the endoscopy.

The procedure isn't a walk in the park, but it really isn't that bad. (feel free to pm me if you like, I can describe it in detail... as can many on the board)

If you have blisters/rashes, it might be possible to do a DH skin test. If it is positive, that is a positive for celiac, and is less invasive. I believe you have to have active blisters/rash for this to work, but perhaps someone else can weight in on that part.

I hope you get some answers and start feeling better soon!

[2BOYSMOM]

Thanks, I was wondering about the possibility of a false negative and how common that was. I've had a colonoscopy and I figured it wouldn't be any worse than that, so probably will go ahead with it. Thanks for your help

[CarlaB]

I'd go ahead with the endoscopy. You also might get a biopsy of the blisters (actually near the blisters) to see if it's DH.

Other than that -- bacterial dysbiosis, Lyme Disease, mercury toxicity, candida???

[Ursa Major]

I would also definitely have the adrenal bloodwork done. The cortisol test should be done at least twice on that day (four times is even better, at 8:00 AM on an empty stomach, again at noon, at 4:00 PM and at 8:00 PM). Also, your aldosterone levels should be checked, and adrenal antibodies.

I've had all the same symptoms as you, and have now been diagnosed with Addison's disease (failure or near failure of the adrenal glands). Especially low aldosterone levels can cause diarrhea and bad allergies/intolerances. Also, as aldosterone levels drop, they will first cause elevated blood pressure readings, which will then start dropping and getting very low. Mine went to 95 over 55 (dangerously low) before I started taking fludrocortisone. Within two weeks my blood pressure went back to normal.

Unfortunately, most doctors are very ignorant when it comes to adrenal issues (they are very ignorant about many things, including celiac disease). Our lab claimed that aldosterone levels between 60 and 780 were normal (a ridiculously large range). When mine came back at 73, and my doctor claimed that it was fine and nothing needed to be done. In reality, readings below the upper third of that range are serious and need medication. A doctor in Germany diagnosed me and prescribed the aldosterone and hydrocortisone, and I am slowly getting some energy back.

[mama2]

Hi, another newbie here with desperate need for help. Long story short....Dx 10 years ago with IBS, recently feeling more and more miserable. Severe headaches, abdominal pain and distention after eating, mouth ulcers, very gassy, off and on bouts constipation/diarrhea, parathesia, blisters on fingers, intolerance to heat, and sudden hypertension. Inability to lose weight even though exercising more and EXTREME fatigue. Ended up at doctors office because of blood pressure and went through all symptoms. The first thing he mentioned was celiac and then went on to others including adrenal issues. Just got blood work back and here are results. (does this look like complete celiac panel?)

Tissue Transglutaminase Ab, IgA 1.2 Reference <7 neg >7pos

Gliadin Peptide Antibodies, IgG, IgA 1 <19=neg >31 =pos

Gliadin Peptide Ab, IgA 6 <19 neg >31 pos

Reticulin Antibody IgA, Reflex <1.5 <1.5 neg

performed at ARUP lab in Salt Lake City, UTAH

The nurse said "everything is normal" except your ferritin level which was 13 with 10-291 being normal and my B12 was low (which I've been told for years). So where do I go from here because I feel anything but normal? Also all thyroid test were normal too. He did mention that if all of this came back negative, I should still go for endoscopy. Please give me your advice and/or opinion.

I had a lot of the same symtoms as you for many years... lots of IBS diag. the last few years had been the worst. never had the blood wrk done, have a family history of celiacs, and had an endoscopy they took 2 biops, they said they could not rule out celiacs and there was some damage to the intestant. Just sent me home. after that i felt more frustrated. Had my second son 9mths ago could not gain weight during the preg and had all sorts going on and he was about 6wks early 4lbs somehting when we brout him home. After that I started to gain more and more weight .... could not loose a lb... excersiced ate right , tried to nurse without supplementing formula, never had enough milk. I was worse than I ever been , til I had enough and 2mths ago my skin rash was worse than ever!!!!went to the doc gave my stuff for the itching and I asked if my rash could be related to celiacs , he did not think so & said it would'nt hurt to try the gluten-free diet, i did. I feel better than I have in years.

[Salwa]

Hello,

Just joined today and I can't tell you how happy I was to discover this website!!!

Where do I begin??????

1995 - Had my first child. I was diagnosed with Post Natal Depression (PND). Never heard of such an illness.

I'm a very fast moving, productive, lively persoanlity, therefore, you can imagine the horror of being paralised PND. It was also accompanied with extreme anxiety.

I was medicated with anti depressants, which didn't help, then got off them after 6 weeks.

1996 - Had my 2nd child was ecstatic!!! 9 months later I was again struck with panic attacks and depression, for no reason whatsoever. Had a great husband, family life, etc.

Then began my research. I was placed on anti depressants again and felt like a guinne pig.......after 6 tries I finally had one that helped. BUT, still wasn't satisfied that this was the problem.

1998 - Was diagnosed with Gall Stones and had my gall bladder removed, which I think started most of my abdominal problems.

My mother's side has a history of Thyroid and my own mother had her Goiter removed and has never had any hormone replacement. She too also sufferrs fromgluten intolerance and anxiety.

2000 - I wrote a book about my journey of Depression and Anxiety but still wasn't convinced that I was diagonosed right.

2001 - I became extremely ill with dizzyness, nausea, and felt full all of the time. Was couch ridden and HATED IT because I'm a very active person. Can never remember a time in my life where I wasn't CONSTIPATED............always been constipated and it was worse during this time.

2003 - I was diagnosed with Irritable Bowel Syndrom by a specialist, followed all his instructions but still felt very unwell.

2003 - Due to no change in health visited another specialist and I was finally diagnosed with being GLUTEN INTOLERANT NON CEILIAC. I'm now on a Gluten Free diet. I exercise regularly and love that but feel exhausted on a daily basis.

2006 - Throughout the last four years I kept getting my Thyroid checked have a deep and intense feeling that I had Thryoid problems. But all test came back normal. My TSH is 1.57. I then came across a Dr. Derry from Canada and his website and he diagnosed me with low thyroid even though the Dr's in Australia disagreed. I cannot say how FRUSTRATING it is when you feel that you believe you've got a problem and yet the Dr's aren't taking any heed. I'm always exhausted and had an iron infusion in 2004, have also now been placed on iron tablets.

2007 - After much research on Thyroid I ended up taking Dr Derry's opinion and placed myself on Iodine - Lugol's solution. I've had relaspes with the Anxiety only and that is because, I believe, I have a thyroid problem that hasn't been addressed.

To cut a long story short after reading some posting's last night I discovered that Gluten Intolerance is normally associated with Thyroid problems - I WAS ABSOLUTELY FLOORED . Last week I got off the Iodine for two days and experienced such severe anxiety it was debbilatating!!!!!! I returned to Iodine and also increased the anti depressants, which I believe, I shouldn't be on, but am TOO AFRAID to get off just in case I relapse.

CAN ANYONE OUT THERE help me with any experience they may have had that is similar to mine......no doctor's have helped and I'm perplexed to know what to do. Happy person with NO ANSWERS!!!!

[Salwa]

Hello,

Just joined today and I can't tell you how happy I was to discover this website!!!

Where do I begin??????

1995 - Had my first child. I was diagnosed with Post Natal Depression (PND). Never heard of such an illness.

I'm a very fast moving, productive, lively persoanlity, therefore, you can imagine the horror of being paralised PND. It was also accompanied with extreme anxiety.

I was medicated with anti depressants, which didn't help, then got off them after 6 weeks.

1996 - Had my 2nd child was ecstatic!!! 9 months later I was again struck with panic attacks and depression, for no reason whatsoever. Had a great husband, family life, etc.

Then began my research. I was placed on anti depressants again and felt like a guinne pig.......after 6 tries I finally had one that helped. BUT, still wasn't satisfied that this was the problem.

1998 - Was diagnosed with Gall Stones and had my gall bladder removed, which I think started most of my abdominal problems.

My mother's side has a history of Thyroid and my own mother had her Goiter removed and has never had any hormone replacement. She too also sufferrs fromgluten intolerance and anxiety.

2000 - I wrote a book about my journey of Depression and Anxiety but still wasn't convinced that I was diagonosed right.

2001 - I became extremely ill with dizzyness, nausea, and felt full all of the time. Was couch ridden and HATED IT because I'm a very active person. Can never remember a time in my life where I wasn't CONSTIPATED............always been constipated and it was worse during this time.

2003 - I was diagnosed with Irritable Bowel Syndrom by a specialist, followed all his instructions but still felt very unwell.

2003 - Due to no change in health visited another specialist and I was finally diagnosed with being GLUTEN INTOLERANT NON CEILIAC. I'm now on a Gluten Free diet. I exercise regularly and love that but feel exhausted on a daily basis.

2006 - Throughout the last four years I kept getting my Thyroid checked have a deep and intense feeling that I had Thryoid problems. But all test came back normal. My TSH is 1.57. I then came across a Dr. Derry from Canada and his website and he diagnosed me with low thyroid even though the Dr's in Australia disagreed. I cannot say how FRUSTRATING it is when you feel that you believe you've got a problem and yet the Dr's aren't taking any heed. I'm always exhausted and had an iron infusion in 2004, have also now been placed on iron tablets.

2007 - After much research on Thyroid I ended up taking Dr Derry's opinion and placed myself on Iodine - Lugol's solution. I've had relaspes with the Anxiety only and that is because, I believe, I have a thyroid problem that hasn't been addressed.

To cut a long story short after reading some posting's last night I discovered that Gluten Intolerance is normally associated with Thyroid problems - I WAS ABSOLUTELY FLOORED . Last week I got off the Iodine for two days and experienced such severe anxiety it was debbilatating!!!!!! I returned to Iodine and also increased the anti depressants, which I believe, I shouldn't be on, but am TOO AFRAID to get off just in case I relapse.

CAN ANYONE OUT THERE help me with any experience they may have had that is similar to mine......no doctor's have helped and I'm perplexed to know what to do. Happy person with NO ANSWERS!!!!

[ElenaDragon]

I was diagnosed with IBS, and after worsening symptoms over a year later, my doctor ran the celiac panel blood test. They all came back negative. However, instead of waiting two months to see my doctor again (and since the anti-spasmodics she gave me were not helping), I decided to try a gluten free diet anyway. It has been a little over a month now, and I feel I am doing better. I definitely still have bad days, and am probably getting glutened without knowing it. However, I plan to keep up the diet another month and then try introducing some gluten back in to see how I feel. If I start feeling sick again right away, then I'll have my answer. After that I will talk to my doctor about whatever I have found out and see what she says.

I think with some things it is necessary to take matters into your own hands. You know your own body and can possibly be more intuitive about what's going on than a doctor can. The good thing is that the gluten free diet is something you can try on your own. You don't need a doctor's permission. One thing to be sure of, however, is that if you plan to have an endoscopy done, don't go gluten free before it is complete or it can affect the results. I decided that I would rather try the diet than wait, so if the diet helps me then I don't need medical tests to tell me gluten is bad for me.

[2BOYSMOM]

At least I don't feel like I'm losing my mind now. All of these symptoms sound so familiar. I had no milk after my last baby either. Been on an anti-depressant since after my first child. Even though the blood work came back neg. I know there is something not right with me. Thanks so much for all your help.