Would Like Your Opinions

[Mommyof4beans]

Hello,

I would very much like your opinions.

I am almost 38 years old. I was diagnosed with Lupus and auto immune thyroid disease when I was 15. Ithe only trouble I have had in the past is joint pain. Almost three years ago, I started having awful fatigue and muscle pain. I was diagnosed with hypothyroidism and my Ana was elevated more than normal.

I was sent to my rheum. Doctor. My WBC was 3 and my hemoglobin was low. Pretty much everything in my CBC was abnormal. I was placed on prednisone. I lost a lot of hair and had (and still do) terrible fatigue. Other symptoms I have are trouble swallowing and brain fog. I have trouble going to the bathroom. I don't go frequently. Once every 3-4 days. I get bloated a lot. I have not had a normal CBC since.

In the past month, I have developed arm numbness from just below my shoulder all the way down into my fingertips. My fatigue is overwhelming. My joint pains are terrible and I have awful leg pain.

I just had more blood work. My CBC was abnormal. My ferritin is 3. Going to see a GI at the end of this month.

What do you think you think?

[GottaSki]

Hello and Welcome!

Many people with Celiac Disease have other autoimmune diseases and thyroid conditions. Your digestive symptoms, constipation, brain fog, fatigue and numbness can all be symptoms of Celiac.

My daugther (28) was diagnosed with Lupus, RA and Fibromyalgia during her early teens. When I was diagnosed three years ago she was the first in our family to get tested and go gluten-free. We now believe that many of her autoimmune symptoms originated with Celiac Disease.

Have you had any Celiac blood tests? If not, perhaps you could ask your primary to order them so that the results are ready for interpretation at your appt with GI.

Full Celiac Blood Panel:

Total Serum IgA

Tissue Transglutaminase IgA and IgG

Gliadin IgA and IgG

Endomysial Antibody IgA

Deamidated Gliadin Peptide IgA and IgG

Also, low vitamins/minerals can indicate you are not absorbing nutrients properly - another indicator of Celiac Disease. You have a low Ferritin - have other minerals and vitamins been tested? These are what my celiac doctor orders for us - both at diagnosis and annually:

Bs, D, K, Iron, Ferritin, Copper and Zinc

One additional caution - not all GIs are Celiac experts. You may want to check if the GI you have been referred to has experience &/or looks to treat Celiac patients.

Last suggestion - if all of your celiac tests are negative - still remove gluten completely from your diet for 3-6 months to monitor symptoms - as removing gluten is often the best test. Just don't remove any gluten before the blood tests because if you are not ingesting gluten, you will not be producing the antibodies measured in the blood work.

Hoping you'll feel better very soon

[Mommyof4beans]

Thank you for your helpful response. I appreciate it.

[Mommyof4beans]

P.s. I have not had any Celiac testing yet. I did not think about waiting to start the diet. Thanks for that. I started a gluten free diet two days ago. Part of me doesn't even want to go to the GI until after I try it. Do you think that is unreasonable? Thanks again.

[nvsmom]

P.s. I have not had any Celiac testing yet. I did not think about waiting to start the diet. Thanks for that. I started a gluten free diet two days ago. Part of me doesn't even want to go to the GI until after I try it. Do you think that is unreasonable? Thanks again.

I would get tested befor going gluten-free if you are planning on being tested for celiac. Celiacs who go gluten-free for a time often need to eat gluten for months if the want an accurate celiac test, and many of us find our reactions to gluten get stronger and more unpleasant the longer we've been gluten-free.

Many family doctors could order those celiac tests for you if you can't get in to see a GI soon.

Have you had your thyroid checked lately? I am a 38 yo mom who was diagnosed celiac just over two months ago, and while eating gluten-free cleared up my migraines, stomach aches and bloating, and helped my muuscle and joint pains, it has done nothing for my fatigue. I found out I have Hashimoto's a month ago and since I know my hormone levels are not where they should be yet, I'm hopeful that it will lift my fatigue whne I find the correct T4 (and T3) levels, and I can get my TSH close to 1.0.

Best wishes. I hope you feel better soon.

[Mommyof4beans]

I would get tested befor going gluten-free if you are planning on being tested for celiac. Celiacs who go gluten-free for a time often need to eat gluten for months if the want an accurate celiac test, and many of us find our reactions to gluten get stronger and more unpleasant the longer we've been gluten-free.

Many family doctors could order those celiac tests for you if you can't get in to see a GI soon.

Have you had your thyroid checked lately? I am a 38 yo mom who was diagnosed celiac just over two months ago, and while eating gluten-free cleared up my migraines, stomach aches and bloating, and helped my muuscle and joint pains, it has done nothing for my fatigue. I found out I have Hashimoto's a month ago and since I know my hormone levels are not where they should be yet, I'm hopeful that it will lift my fatigue whne I find the correct T4 (and T3) levels, and I can get my TSH close to 1.0.

Best wishes. I hope you feel better soon.

Thank you so much. I had my thyroid levels checked and they were within normal limits. I was tested for Hashimoto's in 2010 with negative results. I am on generic synthroid for hypothyroidism. I also get migraines. About once a month I get a migraine that lasts a week.

Did you have hypothyroidism before Hashimoto's? I don't get how all of that stuff works. I hate fatigue.

I hope you feel better too.

[nvsmom]

Thank you so much. I had my thyroid levels checked and they were within normal limits. I was tested for Hashimoto's in 2010 with negative results. I am on generic synthroid for hypothyroidism. I also get migraines. About once a month I get a migraine that lasts a week.

Did you have hypothyroidism before Hashimoto's? I don't get how all of that stuff works. I hate fatigue.

I hope you feel better too.

Most cases of hypothyroidism are caused by Hashimoto's (as far as I have learned). There are a few other causes like cancer, pregnancy/post-partum hormones and insufficient diet, but hashi's is the main cause for hypo.

My doc hasn't actually said I have Hashi's (said it was hard to diagnose it definitively) but I'm calling it that since I have another autoimmune disease besides celiac, and AI's often run in groups. Plus my thyroid antibodies were at the high tip of normal.

I've had my TSH tested before when I suspected thyroid problems, and I remember being told almost 20 years ago that my TSH was at the high end of normal, but the internet wasn't around then to re-educate me on what normal is. I'm guessing I was mildly hypo back then, because of Hashi's, and didn't know it.

Many docs think that TSH levels should be below 2.5 (or 2.o) for T4 therapy because any higher will cause hypo symptoms in people being treated. I've heard that most people feel best when their TSH is near 1.0 (I'm still far from that number). I've also heard that consuming a small amount of T3 (somewhere around 2-5% of you hormone meds if T4 is 98-95%) often helps people feel much more alert and healthy. If your TSH is at a good level, and so is your T4, you might want to consider taking some synthetic T3 or Armour.

I have found that it is the gluten that causes my migraines. I used to get migraines for 5-10 days of a month. Now I have no migraines, just a mild headache (every single morning - lol ) that I'm hoping is related to the hypothyroidism and will (hopefully) go away once I'm properly treated. Last time I had a migraine was over a month ago after one of my accidental glutenings, it lasted about 5 days. Hopefully when you are off gluten, your migraines will go too!

And thanks! I hope to feel better soon too. Good luck!