MsModelSara

Hello all. I am needing help finding a good doctor to see if they can help figure out what is going on with me. My regular dr, and the dr's I've been referred to from them: are all pretty blase about what's going on with me and act like they can't be bothered to figure out what going on.

I have had chronic low vitamin D for about 2 years now, my calcium is now dropping. My most recent lab test showed this, as well as my hemoglobin and hematocrit are elevated. I have Dx'd gluten intolerance and casein intolerance (positive antibodies found in my intestines) but when I was sent to the GI for testing etc, he basically told me that since I didn't have positive blood antibodies for celiac that an endoscopy would be a waste of time to check for intestinal damage causing malabsorption. I'm sure some of you can sympathize!

I have had autoimmune hypothyroidism for 3 years now (Dx'd) but the hypothyroidism has been around since high school, so about 9 years now...some of which I'm sure includes the autoimmune portion pre-Dx.

I'm just so tired of being bounced around and need/want answers and if anyone knows of a dr that is a good listener and genuinely cares about their patients and tries to find answers...I'd love their contact info please...

I'm looking for other celiacs/gluten intolerant people in central virginia. Anyone know of any groups or anything? I'd like to meet other people going through this. It'd be nice to have support and make friends that won't have to worry about "glutenizing" me if they feed me something >_< haha

Sara

Hello everyone. I've finally decided to write my first post on the forums here. I have been following other threads and researching for months now. I'll give a little background on why I'm posting before I start asking my questions: (i apologize for the length)

I have been having random symptoms for so long now, but they have been slowly increasing in severity. Since high school, I have had issues with dry skin and fatigue as well as migraines. I had my wisdom teeth removed in 2006 and the migraines stopped for awhile. In 2005 I got my hypothyroidism diagnosis and that "explained" the extreme fatigue and weight gain and dry skin, hair falling out and all that goes along with hypothyroidism and was prescribed thyroid hormones. I have battled anemia since birth on and off. I have also kept my symptoms of hypothyroidism despite being on hormones, my Dr was looking at me like I was a hypochondriac for repeatedly returning complaining of symptoms. Still always VERY tired, hair falling out, itchy dry skin, my migraines have returned, random constipation/diarrhea. *sigh* I then got my diagnosis of Hashimoto's Thyroiditis (last August) because I got referred to an Endocrinologist finally and she also tested me for Celiac antibodies and it came back negative. My Hashimoto's was very positive though. The normal range is below 20 I believe and mine was over 270. So I have an autoimmune condition causing my thyroid problem. I was doubled on my thyroid hormone and my Vitamin D has stayed low despite taking 50,000 IU a month. That was doubled as well, I am supposed to take that twice a month now. SMH!!! Why just double it and hope it goes up (it stays around 19 despite taking the rx D) and NOT try to figure out why I am not absorbing it?!?! I left it alone for a few months but was still having this nagging in the back of my mind telling me to retest for celiac. I ordered a test from EnteroLab and sent it in. Here's what it told me:

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value
Fecal Anti-gliadin IgA 29 Units (Normal Range is less than 10 Units)

Fecal Anti-tissue Transglutaminase IgA 16 Units (Normal Range is less than 10 Units)

Quantitative Microscopic Fecal Fat Score Less than 300 Units (Normal Range is less than 300 Units)

Fecal Anti-casein (cow’s milk) IgA 13 Units (Normal Range is less than 10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0602

HLA-DQB1 Molecular analysis, Allele 2 0602

Serologic equivalent: HLA-DQ 1,1 (Subtype 6,6)
Interpretation of Fecal Anti-gliadin IgA: Intestinal antigliadin IgA antibody was elevated, indicating that you have active dietary gluten sensitivity. For optimal health, resolution of symptoms (if you have them), and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among others), it is recommended that you follow a strict and permanent gluten free diet. As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well.

Interpretation of Fecal Anti-tissue Transglutaminase IgA: You have an autoimmune reaction to the human enzyme tissue transglutaminase, secondary to dietary gluten sensitivity.

Interpretation of Quantitative Microscopic Fecal Fat Score: Provided that dietary fat is being ingested, a fecal fat score less than 300 indicates there is no malabsorbed dietary fat in stool indicating that digestion and absorption of nutrients is currently normal.

Interpretation of Fecal Anti-casein (cow’s milk) IgA: Levels of fecal IgA antibody to a food antigen greater than or equal to 10 are indicative of an immune reaction, and hence immunologic “sensitivity” to that food. For any elevated fecal antibody level, it is recommended to remove that food from your diet. Values less than 10 indicate there currently is minimal or no reaction to that food and hence, no direct evidence of food sensitivity to that specific food. However, because 1 in 500 people cannot make IgA at all, and rarely, some people can still have clinically significant reactions to a food antigen despite the lack of a significant antibody reaction (because the reactions primarily involve T cells), if you have an immune syndrome or symptoms associated with food sensitivity, it is recommended that you try a strict removal of suspect foods from your diet for up to 12 months despite a negative test.

Interpretation Of HLA-DQ Testing: Although you do not possess the main HLA-DQB1 genes predisposing to celiac sprue (HLA-DQB1*0201 or HLA-DQB1*0302), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having two copies of a gluten sensitive gene means that each of your parents and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe.

So I understand why my body has so many issues: I cannot digest gluten or casein. My body attacks these things like a virus, and also causes my body to attack my thyroid when I ingest them.

But my question is this: Can you have Celiac without having the classic DQ2 or DQ8 genes? I've read there are other genes that are known as Celiac genes in other countries but just not here in the states. And I've even read people's stories where they have developed Celiac without having any Celiac genes due to a stressful life event or illness. So if I am told I have severe gluten sensitivity, and gluten sensitivity is the precursor to full blown Celiac....how can I be told that i definitely won't develop Celiac? I don't understand Doctors. I was doing an almost gluten-free diet when I was doing a weight loss program with a Dr. office to jump start my weight loss and was feeling so great. When the program ended, I was able to re-add carbs and breads etc...Im so bloated, I feel sick when I eat most of the time. When I have to go to the bathroom....I NEED to go as soon as I feel the urge, I can't "hold it". I get real bad gas cramps or pains, my fatigue....ugh Im always tired! I've also noticed bone pain....I don't know how long I've had it because I'd always notice it but it's like shooting pains and goes away after a few minutes. Sometimes it's in my forearms, more often in my lower back or back side of my hips and tailbone, a lot in my shins, sometimes my thigh bones, and the sides of my feet. It's not an all day thing, but at least once a day somewhere i'll get shooting pains somewhere. If I sit too long on a hard surface, my tailbone and low back kill me and it takes me a few minutes to stand up and straighten myself out. Did I mention I'm only 25? :-( Or if I lay on the floor on my back I have to hand my legs bent otherwise the pressure on my back is too intense and painful. My calcium has always tested normal though so I guess this is why no Doctor has ever evaluated my bone density or anything.

Alright, I'll end my novel for now and see what anyone has to say. I really appreciate everyone's time reading all of my story and any feedback you have to offer me. I need help and support and guidance on where to begin and what to do....

Sincerely,
Sara