View Full Version : Hi, I'm Nicole - recently diagnosed with AIs

09-16-2012, 03:28 PM
Hi. My name is Nicole. I'm 38 years old and have recently been diagnosed AI's. I has had various things wrong with me for years but I stopped asking doctors about them over a decade ago because they could never tell me what was wrong and never offered any explanation... A story that's starting to sound depressingly common.

This summer, after looking into health issues of my kids, I found that celiac disease described me and the issues I've had since I was a baby. I took a home test which ended up positive and brought it to my doctor so he'd test me. I'm celiac.

I then requested blood work, vitamin levels and TSH because celiacs often have problems with nutrient absorption and fatigue. TSH was off so we ran it again with thyroid peroxidase antibodies and low and behold, I have Hashimoto's too.

I am a couple of months into eating gluten free and my gut is improving. My hypothyroidism is in the infancy of being treated so no improvements in my fatigue or hair loss yet. What led me here is that I've had my joints go down hill again.

I had my doctor test me for RA 15 years ago because my finger, hand, shoulder and hip joints gave me such pain. My joints didn't work well for a couple of months. They swelled a bit and my fingers even felt warm (which for me was unusual, I'm usually icy cold). I remember my doctor (at the time) telling me my RF was negative but another test indicated that I could get RA in the future. I bought my records from my doctor when she quite her practice so I had a look at them. I guess she was referring to a speckled ANA of 1:160 which she didn't tell me about. I had a low hemocrit and hemoglobin too; sed rate was normal.

I googled ANA and found a few things that fit me. First was Hashimotos. Got it. That could be it or it could be nothing. I read further and found ITP and it's link to Lupus... or not. I developed ITP 20 years ago. It almost beat me. My platelets were down to 2K and I eventually had a splenectomy. I found those old records too and found a narrative that mentioned a positive Coombs test of 1+, a pending ENA (which was not included), and an ANA test of 1:160... this one was five years earlier. No one said a thing to me about that test back then, at least not that I recall.

I looked at the Lupus diagnostic criteria and I fit at least 3-4 of the 11 (possibly as many as 7 if you say migraines are neurologicall symptoms, etc.) but I'm hoping it's a coincidence. I already have three Ai's; I'm hoping some of my symptoms come from under treated Hashi's and not yet healed celiac.

What scares me is that I have:

Arthritic pain and stiffness (minimal swelling)
Oral ulcers - I think I have some now. It often happens when I get flu-like, as I have been for the past few weeks since my joint pain started up again. They don't hurt much. Small bumps to larger raw feeling areas.. never thought anything of them before.
Hematologic disorder = thrombocytopenia
ANA 1:160 in 1997 and 1992

And then there are other things that could also be Hashi's or celiac caused like migraines, fatigue, hair loss, more fatigue, dry skin, GI issues, bad joints, bad back with burst disc that caused drop foot/paralysis, cold body, low libido, and I hate to admit it, but I'm not as sharp as I used to be.

I chalked it all up to aging, sports injuries and genetics until a few months back, but I now know I've had celiac 38 years and I found old TSH tests that were elevated so I've had Hashi's for about 20 years (for sure after a case of mono and pneumonia as a teen). My doctors dismissed my ITP so I sort of did too, I never think of it, but if it's Lupus I better find out since there are so many issues to be aware of.

I haven't yet been examined for Lupus. I am collecting info, and compiling symptoms and dates for my doctor to look at (he tends to need prodding, but he's good if you need antibiotics LOL).

I do wonder if it's possible that I've had undiagnosed Lupus for a few years (almost decades)... that seems unlikely. I get joint pains for a few months of the year; and it does affect my everyday life but still...

If anyone has advice or anecdotal stories similar (or not) to mine, I'd love to hear it. I knew almost nothing about Lupus, or UCTD or MCTD a few days ago, and now I feel like my head is swimming with info as I try to sort it out for myself (I don't trust doctors much anymore). Any help or encouragement would be appreciated.

09-16-2012, 03:47 PM
Welcome to WHL Nicole in Canada, eh? Do you have a rheumatologist available to you? Are they absolutely, positively sure you're celiac? It's not an "intolerance", but an "allergy"? I'm "intolerant". Usually, a dairy intolerance goes hand-in-hand with the gluten intolerance, so you might check that also, if you haven't already. Of course, most folks are intolerant of bovine milk and products, but don't tell the American Dairy Association that...

Hashimoto's by itself, in the fact that your thyroid goes down, if left untreated for a time can indeed cause you all sorts of issues, including severe joint pain and discomfort. The autoimmune process of it can cause systemic soft tissue swelling, and that all "clouds" other diagnoses. There is also a "brain fog" that goes with low thyroid. Almost all body functions are controlled from the thyroid, so your blood pressure, blood sugar, heart rate, body temperature, adrenal action/reaction, etc., can all be affected. It's definitely important to get the thyroid on an even keel. But you really should be seen by at least one rheumatologist, ASAP, which is probably a bit tougher to get done in Canada than in the US (though not for long)...

09-16-2012, 04:28 PM
LOL You used the "eh" correctly! You can be an honourary Canadian. ;)

Yep, I'm definitely celiac. Ttg IgA and EMA blood tests are very specific to celiac, which is an AI and not an allergy... although I've known of celiacs who also have a wheat allergy. And yes, I don't do well with milk either; up to a few months ago I thought lactose intolerance was my only food sensitivity . Ha!

My Hashimoto's is not yet under control, my doctor is starting me off with a frustratingly conservative dose. I haven't felt any better and in fact, I started feeling more achey, sore and flu-like within a week of starting the thyroid hormones; I feel worse... hoping that's a coincidence! LOL I'm hoping my symptoms are still from my undertreated thyroid or my still healing GI tract. I've just got this gut feeling that there could be more. Here's hoping I'm wrong, eh? ;)

I haven't brought Lupus or UCTD up with my doctor yet. I just recently connected some dots. I'm hoping to see him this week and I'll request a few more tests along with my thyroid tests that i have to do in a couple of weeks. if anything comes back abnormal, I'm predicting at least an abnormal ANA again since Hashi's can cause that, then I'll push to see a rheumatologist... and then I'll wait months and months to see him and by then my flare will be done. :skeptical: Gotta love the health care system. lol

Thanks for the advice. :)

09-16-2012, 06:59 PM
Bummer 'bout the celiac. Avoid at all costs... Hypothyroidism can seem to worsen as your levels come up. It's from the "change". I'd lose hair when the thyroid went down, *and* when it went up. Same with the body aches and pains. Once you "level", things settle down. From what I understand, you will most likely always test positive for the AI component of hashimoto's, sometimes higher, and sometimes lower in level. My doc initally started me out low-dose also. Reason explained to me was to see my reaction to the medication, and to attempt to judge a "raising" dose. They don't want to bring you up too fast apparently. It took almost 3 years to get me "balanced". 'Course, I'm naturally unbalanced...

09-16-2012, 09:11 PM
Hi Nicole,
Welcome to WHL. As you are finding, AI issues tend to come in packs. My rheumy said MCTD - I have an overlap of Lupus, RA, Sjogren's and Psoriasis.
One of my daughters has definite Celiac disease and Lactose intolerance. She had a terrible time getting pregnant until she got it all under control. Now she's eating gluten and lactose-free, is in excellent health and is eight months preggers - Yay!
Another daughter has IBS, and we strongly suspect she might be gluten intolerant, too. Her little boy has some of the symptoms as well.
I was just on FB, messaging with another daughter who is living in Germany. She's had endometriosis and a host of other symptoms. Now she's having yeast problems - the base doc said Candida. That's common in Sjogren's patients, so I warned her about that.

We all seem to have problems getting the docs to put all of our symptoms together to look at the big picture. You seem to be on the right track.
Good luck, and keep us informed.

BTW - I had to wait six months to see my rheumy when we were in Texas, and I have "good" insurance. I also often refuse tests that the docs want because my deductible has gone so high. I wish that we had the kind of healthcare plan that you have in Canada!

09-17-2012, 07:19 AM
jmail - "Course, I'm naturally unbalanced..." LOL :) I wonder if my recent problems are Hashi related. I hope so. But I don't want to take 3 years to be balanced now that I know how to fix a problem. That must have been frustrating!

Marla - If your daughter is a celiac, she must avoid gluten for life even if she appears to be symptom free. If she is gluten intolerant, she can eat gluten and not feel well but when celiacs eat gluten it causes inflammation and the intestines are damaged. It's another AI, and AI's don't go away or get cured... we just manage them, right? Many outdated doctors declared their celiac patients cured and had them eating gluten again but the symptoms always return, and often along with other AI's. It's thought that the inflammation and stress caused by untreated celiac can kick start other AI's into activity. I think that happened with me... Perhaps mention that to your daughter... and your other daughter and grandson who are untested. :) ... And how many daughters do you have?? LOL

I feel bad for my three boys knowing that AI's run in families. I think something is up with my oldest who is 9. We believe he has mild Aspergers (not pursuing the entire diagnostic process) which doctors are starting to think of as an AI, He has a few GI issues, a recent slightly elevated TSH (4.85) which up here is still considered quite normal, and his growth is slowing (dropped from 75% to 25%) so his 7 year old brother is now taller than him. I'm switching them all to gluten free eating just in case it's celiac (kids often test false negative).

And yes, I'm glad we don't have to use insurance up here, but on the other hand, we have more limited options. Many Canadians head out of country or pay private clinics to get procedures done in a timely manner... well, those who can afford it anyways.

Thanks. :)

09-20-2012, 01:06 PM
Hey Nicole, the wife and I use the test at http://www.autism.com/index.php/ind_atec for evaluating our 10 year old son (and me). The actual "test" itself has a link at the bottom of the page. It is a bother to get things "just so" that it'll actually email back to you (the test results), but it is a quick and easy tool once you get the hang of it. Gluten and casein free are a good idea for anyone with a "leaky gut", which is what they call it with asperber's. You'll see marked improvement (usually) and an improvement with "socialability" after a couple of weeks gluten/casein-free.

09-20-2012, 10:12 PM
LOL - I have four daughters and one son!
Hillary has a definite diagnosis of celiac. She is very aware of all of her limitations and she has gotten very good at living gluten-free.
She's learned to cook well and stay on her diet, and she knows all of the restaurants in the San Antonio area that have true gluten-free menus.
She's due to have a baby girl in the next few weeks. Her midwife warned that the hospital does not do gluten-free diets correctly (imagine that!), so she's packing her own food and she's highly motivated to get out of there after the mandatory 24 hours. The baby will also be treated as though she is gluten intolerant, too. The midwife cautioned Steve to keep after the hospital staff about that, since they are bad about ignoring such things.

Kayla is highly suspicious that she might have it, and she does wonder about her son Kyle. However, she's in the middle of a nasty custody battle with a jerk of an ex, and she currently doesn't have insurance coverage. She's starting a new job that will give her insurance in 90 days, so I hope that she will start looking into getting some proper testing soon.

Meghan has bouts of endometriosis and a few other symptoms that make me think that she will eventually show up with AI issues too. She's living in Germany right now, and has to deal with military docs - ugh! Her neighbor has introduced her to a German doc who has actually listened to her, so I'm hopeful that she might get some answers there.

My oldest girl, Heather, and my son Tom both seem to take after their father and are disgustingly healthy. I'm hoping that they remain that way.

09-21-2012, 07:54 PM
Jmail - Thanks for the link. We're not positive my 9 year old has Aspergers but we highly suspect it and his ped also said he could see the signs. Because we homeschool, he doesn't need extra classroom help or coding, plus he is high functioning if it is aspergers. Sometimes I think he just takes after me... for a woman, I'm not the most socially adept. lol He doesn't seem to need an OT or therapy at this time so we're letting it slide.

We have him almost completely gluten-free now. We've been switching slowly because he has a fairly limited diet. The casein free is the part that worries me since he doesn't eat much protein or fats, and he's small to begin with... Ah well, we'll get there.

Marla - Five! Wonderful! You must have had a busy house for many years. My husband stopped us at three... Apparently I'm not a very pleasant pregnant woman! LOL Good luck with the new grand daughter; I hope the hosptial treats them well and everything goes perfectly. Sorry to hear about your dd's issues with her ex; what a stressful time for her. There are home celiac (ttg IgA) tests available that are (relatively) inexpensive if she wants to try that route. I tried one called the Biocard test, and found it was accurate. Best wishes to your dd in Germany; I've heard those military docs are a lot of work... and best wishes to your disgustingly healthy children too! LOL