Ahhh! What Is Going On? Gluten Intolerence/adrenal Fatigue/ Hashimoto's?

[jitters]

Okay... I've had it! I am by no means new to this whole Celiac/gluten thing. My mom has been living with Celiac for almost 15 years now. I went gluten free about 5 years ago and felt SO much better. It was amazing. Fast forward three years and I was married with one child, still doing pretty well with an occassional gluten slip up every now and then. I have no major physical symptoms other than a rash on my hands, cold sores, eye styes, and insomnia when I eat gluten. I don't have any IBS symtoms or any other gastro problems with gluten other than an occassional stomach ache and I always gain weight when I eat it.

Okay, so by this point I'm doing very well. I'm eating gluten free, have very little stress... life is good. Then comes my second pregnancy... not so good. Tired all the time, regular pregnancy right? I have my second baby via c-section (like my first) only my recovery is NOT anywhere near as easy. I was in pain constantly, tired, brain fog, could barely funtion. I blame it on getting a tubal ligation, post-partum issues, hormones, West Nile, everything. The year wears on and I see so many doctors and NO ONE can give me an answer other than "maybe it's depression." I am NOT depressed- I am in pain and can barely get up in the morning. Yes, I do understand that pain and fatigue are symptoms of depression but I know me, and I'm not depressed. I see my family doctor who refers me to an arthritis doctor. She says I do not have RA, but maybe its depression from the baby. I tell her its been a year- isn't that a long time to have post partum? She puts me on Welbutrin. It does nothing for me. I quit taking it. I see my girl doctor thinking that since I had a tubal ligation maybe its just hormones. She agrees and puts me on birth control. It gives me migraines, we try another kind, same story. I go back to my regular doctor and she has no clue what to do. Prescribes me pain killers and says I should give welbutrin another shot. I give in.... I am desperate to feel better by now. My baby is now a year and a half... so, after about 3 months of antidepressants I feel the same- they don't work and never did. Oh, I should mention I've had every blood test under the sun and all say my Thyroid is low but not low enough for meds. Enterolab says my husband and daughter have gluten issues, but I don't?? I'm the only one with family history, the only one who is having this level of issues. I'm so frustrated!

Ok, fast forward to last night. It has now been two years of hell... I meet with a doctor who does "nutritional analysis". She's very smart, also has a Master's degree in biology and chemistry, etc. She has been doing this for years. She takes a ton of blood and analyzes it, she does a way indepth study of it. Its really neat to see it all. The results throw her for a loop! I show no autoimmune problems.... ZERO inflamation at all (which she has never seen, even in a healthy person, she says everyone has some inflamation normally) but my cortisol levels are way high which tells her my immune system is in a major crisis and the inflamation test is lying? My white blood cell count was normal and my red blood cell count was too high. My TSH is low at .88... I don't know if thats a treatable level or not for Thyroid problems. My TBG is NEGATIVE normal is 21-52. I guess that is what moves the thyroid hormones around the body? So my thyroid is working but its not getting around?? She said my glands aren't talking to each other, so my hormones are a mess. I did eat gluten for this test by the way...

So basically, after giving me a run down of everything and explaining it all in depth she says that she does think this is autoimmune. That given my history I do have gluten problems, and that I am in crisis- I have adrenal fatigue and I do have Hashimoto's as well, even though its not showing up, everything in her gut says this is autoimmune, etc.

I know this lady knows what she is talking about- I really don't doubt her as she does not diagnose everyone she sees as having autoimmune problems. But I'm also wondering if this all makes sense to you guys? Is she just telling me this because she knows I think I'm gluten intolerant and I eat gluten free?

So, if this is adrenal fatigue and hashimoto's what do I do? Do I take these results to my regular doctor and have her treat me? Or do I supplement and eat right and hope for the best? I plan on getting the adrenal fatigue book soon, but from what I gather this is another thing that doctors either believe happens, or don't?

Can someone please throw their two cents in? I would really appreciate it.

On the plus side after telling my husband for 6 years that I think he has a gluten problem he actually believes it now since someone else mentioned it. So now our house is going gluten free, again!

[rinne]

Hi.

I'm sorry to hear that you have been in distress for so long without any answers. I can relate.

What I understand you to be saying is that there is a history of Celiac in your family, that you know a gluten free diet works well for you, and that your second pregnancy took more out of you than you have been able to restore even on a gluten free diet. Yes?

My own feeling and experience is that when we are first ill we know that we are ill but that conventional testing doesn't catch it because in the beginning there isn't any damage just the body knowing damage is being done and warning us through discomfort that that is what is going on. So it doesn't surprise me that tests wouldn't show anything.

I had the same experience of being in pain, knowing something was wrong, going for tests and being told there was nothing wrong. Wrong on their part! I tried various things such as acupuncture and even went off to a private clinic and spent thousands of dollars, they wanted to do more tests and provided me with a diet, after doing a nutritional work-up, that did not work for me.

I keep figuring it out as I go.

In your case I would ask if anyone has checked your iodine levels, iodine is so connected to the thyroid and there is scientific thinking out there that some of our current health problems are related to iodine deficiency.

I suppose the "proof is in the pudding", if the nutritionist can help you that would be wonderful, as to whether or not she sees and understands the whole of your problems that is difficult to say, you did help her with the diagnosis. If you are going to work with her I think it would be good to ask her to set up a time line with in regards to improvements, and to re-evaluate as you go along. I would also be reluctant to spend a ton on money on supplements if that is part of her program.

I don't want to discourage you because she may be great but I became very cynical with the alternative health professionals, I saw several and it struck me that they had a template of the most common problems that they would simply produce. They were all very happy to treat me, they would have been glad to treat me forever.

One alternative practioner told me it wouldn't be a problem to be tested for Lyme. When I had asked my regular doctor for the test, based on the rash which I had been seen for, she agreed to refer me but told me after that she was done with me. This from a doctor I had seen five times in five years and three of those five times were in the last year. Lyme is a huge political issue and getting the referral from her in no way meant I would get the test.

I have been ill for nearly six years, started with a tick bite, Lyme, and ended up with celiac. The first two years wracking physical pain that roamed around my body and then a complete collapse of my digestion about three years ago. I went gluten free as soon as I learned about Celiac but after two and some years on a strict gluten free diet with some improvement but still not recovered I switched to the Specific Carbohydrate Diet and am now finally seeing the possibility of healing.

Sorry to have run on so long.

I hope you find some relief soon.

[whistle]

Hi Jitters,

I don't know if I have celiac yet, but I've had thyroid problems for several years. Because of that, I see an endocrinologist. That may be a good idea for you, too.

[mommida]

Have you considered allergies? You can develop an allergy at any time of your life. (for an allergy IGE should have shown up. Or Eosiniphils, but they would be located in the specific location of allergic response) Food ingested, inhaled, or contact.

My aunt had a lifelong blood disorder (Most likely it was Fanconi Anemia, she was born with only one kidney) were her body did not make enough [MATURE] white blood cells. She had to have her blood cell counts - both white and red- monitered closely. Since white blood cells are used for your body's immune system, - NO inflammation- that should be a big clue. White blood cell count normal-but were the white blood cells shown to mature and normal shape?

[Mtndog]

Oh Jitters- ((((HUGS))) I'm so sorry you've been through so much. Unfortuantely, I literally feel your pain. For me, after going gluten-free, it turned out to be adrenal fatigue and subclinical hypothyroidism and celiac and Lyme. My system pretty much collapsed because I'd had Lyme so long and had gone throught the stress of losing my mother quite suddenly to cancer.

So, if I were you, I would try to find a physiatrist about the pain. A physiatrist is an MD that deals with the muscles and joint and can help with medication, therapy etc. That will at least help you control some symptoms until you can find out what is really wrong.

For me, my Lyme doc prescribed Armour Thyroid which has worked wonders! I didn't realize how much it helped until I ran out two weeks ago. For adrenal fatigue, I took cortisol (?) for awhile, also prescribed by my Lyme doctor.

I hope you can get to the bottom of this soon. If you want any info on Lyme, feel free to PM me but if you show no signs of inflammation, that's a GOOD sign!

[sugarsue]

Hello and first off HUGE HUGS!

I have been living with hashimoto's for over 10 years. Your TSH sounds like it's at a good level. Other tests I highly recommend if you have not had them are Ferritin (iron stores) and Vitamin D. If you are low in these it will cause you a lot of pain. These were the two biggest savior's for me and my doc was not interested in testing me at first but I pressed the subject.

Other than that, I am not skilled enough to really give you much advice. There is not a lot that doctors will do for high anti-thyroid antibodies. You should check out about.com and their thyroid board for more information. Mary Shoman I think her name is. She has written books on the thyroid subject. As far as the gluten connection, I am just learning all about that and won't be any more help than the other informed people on this board. Good luck to you! I wish you the best!

S