Another Symptoms Question?

[EmilyRD]

Hello all!

I am new to this whole posting thing, but I have been browsing this forum for a while as my GI symptoms appear to be consistent with Celiac. I was wondering if maybe someone can offer me some insight on what might be going on with my body! My history is as follows (sorry for the detailed descriptions): 1 year ago I was diagnosed with Hashimotos and they are still trying to regulate my thyroid levels; About the time I was diagnosed with Hashi's I began to lose weight (I think I have lost a total of 20 pounds in 1 year), and I have random bouts of diarrhea and constipation. I thought maybe this was related to my thyroid but now I am not so sure. Some of my stool has been oily and some actually float (once again sorry for the detail). I am a Registered Dieititan, so I was thinking maybe I am suffering from malabsorption and that is causing the weight loss? But it seems like there are some days that I eat and then go to the bathroom all day! And also even when I eat a large meal (or seamingly large for me) I am still starving afterward. It is the weirdest feeling, but it usually occurs after I eat something that's full of carbohdyrate. And sometimes accompanying my trips to the bathroom is a dull pain in my lower right abdomen.

Anyway I had the celiac panel done about 6 months ago, but the bood tests came back negative. I am still experiencing these symptoms but I was wondering if this is all normal GI stuff, or if it is something I should be concerned about. I have also read that there is a link between autoimmune thyroid disorders and celiac disease, which is further confirming that I might actually be suffering from this.

I appreciate any help you can offer me!!

Emily

[Mother of Jibril]

Hi Emily,

Welcome to the group!

I was diagnosed with Hashimoto's at the end of July. I was having ALL the symptoms you mentioned, plus I had lower abdominal pain that was so intense I had to stop whatever I was doing several times a day and comfort myself (it felt a lot like being in labor ). I kept reading about connections between thyroid disorders and gluten, so after consulting with an allergist I thought... why not try the gluten-free diet? I noticed a difference within 48 hours.

My celiac panel also came back negative... maybe because I had already been off gluten for six weeks. Later I found out that I have the DQ8 gene, and then my mother was diagnosed with celiac disease. So... I'm pretty sure I have it! It explains soooo many things about my medical history. I started having symptoms of Hashimoto's when I was 17, but I thought the constipation, hair loss, feeling cold all the time, etc... was just "normal" for me.

The symptoms you're having are not normal... have you tried the gluten-free diet yet?

[EmilyRD]

  Mother of Jibril said:

Hi Emily,

Welcome to the group!

I was diagnosed with Hashimoto's at the end of July. I was having ALL the symptoms you mentioned, plus I had lower abdominal pain that was so intense I had to stop whatever I was doing several times a day and comfort myself (it felt a lot like being in labor ). I kept reading about connections between thyroid disorders and gluten, so after consulting with an allergist I thought... why not try the gluten-free diet? I noticed a difference within 48 hours.

My celiac panel also came back negative... maybe because I had already been off gluten for six weeks. Later I found out that I have the DQ8 gene, and then my mother was diagnosed with celiac disease. So... I'm pretty sure I have it! It explains soooo many things about my medical history. I started having symptoms of Hashimoto's when I was 17, but I thought the constipation, hair loss, feeling cold all the time, etc... was just "normal" for me.

The symptoms you're having are not normal... have you tried the gluten-free diet yet?

Thank you for your reply! It is very comforting to know that my symptoms are not normal. I have not yet tried the gluten-free diet, but my only reason for doing this is because I know how expensive it is and I am afraid I would end up losing more weight . I realize that the majority of the food I eat contains gluten, so I would have to completely change my diet! But I am a Dietitian so it wouldn't be hard to do. I switched to a new Endo doctor this year, so maybe he can order the biopsy to be done to confirm if I actually have Celiac disease or not. Question for you though, did you have any problems with dry skin so bad it itches and itching/swelling hands?? Just a few more weirdo things going on with my body.

Thanks so much for the advice!!

[Mother of Jibril]

  EmilyRD said:

Thank you for your reply! It is very comforting to know that my symptoms are not normal. I have not yet tried the gluten-free diet, but my only reason for doing this is because I know how expensive it is and I am afraid I would end up losing more weight . I realize that the majority of the food I eat contains gluten, so I would have to completely change my diet! But I am a Dietitian so it wouldn't be hard to do. I switched to a new Endo doctor this year, so maybe he can order the biopsy to be done to confirm if I actually have Celiac disease or not. Question for you though, did you have any problems with dry skin so bad it itches and itching/swelling hands?? Just a few more weirdo things going on with my body.

Thanks so much for the advice!!

The gluten-free diet can be expensive if you buy a lot of the special substitutes (rice pasta, gluten-free cookies, gluten-free bread, etc...). I do a lot of cooking from scratch. I also figured out that I'm sensitive to corn, which is in EVERYTHING. Simple foods like meat, vegetables, fruit, nuts, seeds, etc... are a lot easier to control when it comes to cross-contamination. Plus they're pretty easy on the budget. I had to stop eating at restaurants too... that really saves a lot of money! If you're worried about losing weight there are plenty of high-calorie foods that can help: coconut, avocado, chocolate, nuts, pumpkin seeds, etc... One ounce of almonds has more than 500 calories. In the morning I like to have soy yogurt with sliced almonds, shredded coconut, sliced banana, and a little bit of pure maple syrup

On the dry skin issue... YES!! That has been a big problem for me. It's better now that I'm taking thyroid medication, but still noticeable. I have some theories about why that might be, since I also have chronically dry eyes, mouth, nose... I have some appointments next month with an endocrinologist (finally), a rheumatologist, and a new gynecologist.

You might want to ask someone (maybe a dermatologist?) about the itching and swelling. Itching might just be from the dry skin, but I also have inflammation (redness, warmth, itching) on my face and scalp... another sign of my autoimmune problems. I've had SO many weird skin issues After I had been gluten-free for three months I started getting an itchy rash on my hands and arms when glutened myself. I never had that before.

[ravenwoodglass]

You could very well be one of us. Make sure you don't go gluten free before you have the endo done. There is a chance of a false negative even on a full gluten diet so you want to give it the best chance you can. Did they do a full celiac panel including a total IGA on you when they tested? A low total IGA will effect the test results and also result in a false negative. There are also some of us who just don't show positive on the blood tests. This includes some who were diagnosed by biopsy so after all the testing is done that you choose to have done do give the diet a good strict try.

As to it being expensive I have found I spend less than I did before I was diagnosed. I buy gluten-free bread, cracker, pretzels and the occasional cake mix but the savings from not buying all the convience foods I used to use evens out. I eat fresh or frozen single ingredient veggies and fruits, fresh meats and fish, beans and rice, potatoes etc. If you have a Wegmans near by they label all thier gluten free stuff in the regular foods so they make a trial easy, all you do is look for the G. It did take me awhile to get used to cooking most of my food but I soon realized that I could wrap some fish and veggies in foil and pop it in the oven and go sit and read the paper instead of rushing through a drive through or waiting for a delivery. A rice cooker is also a great appliance for us. You just put the rice in the bottom with water and then toss whatever in the steamer basket and your done.

The diet can be tough to get used to at first and during your trial it might be best to forgo using a lot of specialty stuff. One good reason for this is that many products may have ingredients that your body isn't used to consuming. Things like soy flour, lupine flour, bean flours, xanthan gum etc can be a problem if your not healed and your not used to them.

I hope you get some answers soon. You have come to a great place for info and support.

Oh as to the itching and swelling, you might want to check your hand lotions for wheat germ oil or oats in some form. If they are in there you may want to look for a different lotion and see if it makes a difference.