Confused...

[shan11180]

So I'm a bit confused... About a year ago, I was begining to feel terrible to the point that I went in to see my doctor. They decided I was fine, but I just couldn't get myself back to feeling well. Because I am overweight, I tend to blame EVERYTHING on my weight. The problem I was having was that I felt so terrible that even the thought of getting up and moving had me exhausted. I finally decided that I needed some antidepressants to try and get me out of my funk (as I was referring to it). While at the doctors office, he decided to check my thyroid levels, as they do periodically becasue I struggle so badly with my weight, only this time, numbers came back that showed me as having hypo thyroidism. He decided to wait for three months and test me again, but at this point I said 'NO!' send me to a specialist! I saw an endocronologist, who did additional testing, and found me to have Hashimoto's as well as a vitamin D deficiancy, which then prompted him to test me for celiacs, which shockingly, came back possitive. I am scheduled to see a gastroentorologist in a few weeks for a 'consult'. I guess I don't really understand the process for this. Should I anticipate a biopsy? And how does one go for 32 years, 3 kids, uncontrollable weight gain, and no stomach issues, without knowing that something is wrong? Can celiac's just 'appear' one day? And what should I anticipate at the consult? So many questions, and I can't seem to find any celiac's around to help. Any help would be much, much, much appreciated!! It's a bit scary when I do my research and see the symptoms and what can happen if left untreated. So as I said early...I'm just a bit confused!

[mushroom]

Hello, Shan, and welcome. Lelt's hope that together we on the board can help resolve your confusion

How does celiac happen? Often suddenly, surprisingly enough. It is a genetic hereditary disorder, but the genes are predisposing only - they do not guarantee that you WILL develop celiac disease. That takes a trigger to set it off, some kind of physical or emotional stress on the body. For some women, childbirth can do it and this may have been the case for you. Whilst some babies are born with it, perhaps for them the trauma was their birth also. So the disease can appear at any time of life and sometimes it is hard to pinpoint the trigger. Unexplained weight gain is often a symptom, less well recognized than the obverse of the coin, weight loss which doctors more frequently associate with celiac. Lethargy and depression and fatigue are also symptoms. Thyroid problems are common and Hashimoto's is an autoimmune disease also, which often co-exists with celiac. If you are celiac you are more likely to develop other autoimmune diseases. Vitamin and mineral deficiencies usually accompany celiac disease, because it is a disease of malabsorption, interfering with the digestive process in the gastrointestinal tract. Not everyone, however, has the obvious symptoms which normally accompany this digestive disorder. It stands to reason that if our digestive system is not working properly you are not going to be absorbing the proper nutrients in the right amounts from your food. Vitamin D is the most prevalent deficiency, I would say, and the most important one to supplment in sufficient quantity and type to avoid osteopororis. So if you have not yet been prescribed supplements this is something to talk to your GI about.

So what to expect from your GI consult? Yes, he will probably want to do an endoscopy with biopsy to confirm the diagnosis. Hopefully, you willl find a good one who will be able to answer your questions about celiac, but even if he does, feel free to keep asking questions here Have him test your nutrient levels for B12 and other vitamins, for potassium, magnesium, calcium and zinc. Make sure your iron/ferritin levels are checked. You will likely not get much dietary advice from him beyond the "avoid gluten" althugh some GI's doe have some handouts. He may refer you to a dietician. He may set you on a follow-up schedule - a six-month follow up is quite common, where he will retest your antibodies and check that you are diet compliant and that it is working for you.

Best wishes for a great improvement in your health, and that you are able to regain your "get up and go"

[OptimisticMom42]

Hello Shan,

Boy, I haven't been here in a long time! I lived here when I was first diagnosed. So here's the thing...... it seems really sudden but as you get well things will go away that you had gotten used to or had attributed to other things. You attribute much to your weight that could be celiacs. Your weight itself could be celiacs. Those allergy headaches, those sore feet, the pain in your lower back.......

I was over eating because I wasn't absorbing nutrition. I was always hungry.

I had allergy headaches because I was eating things I was allergic to and because I was low on vitamin D.

I had pains in my feet because I was low in magnesium and had started developing neuropathy.

I was having pains in my lower back (mild cramping) because I was eating dairy which I found I am also allergic to.

There's more but the reason I stopped coming here was because I got tired of hearing myself whine LOL and needed to get on with feeling better.

So soak up all the knowledge, start feeling better!

[rosetapper23]

Excellent responses! I just wanted to add that if your gastro-enterologist does a biopsy and the pathologist concludes that your biopsy is negative for celiac, this is very common. There's a high rate of false negatives for celiac biopsies, and the blame can usually be attributed to incompetence on the part of either the gastro, the pathologist, or both. Sometimes, though, the scope is simply not long enough to reach the damaged area. Since you have tested positive to celiac and it is extremely rare to have a false positive, you should still follow a gluten-free diet if the biopsy is negative. Assume that you DO have celiac and that the biopsy will let you know how extensive the damage may be (or it might not).

[shan11180]

Wow! Thank you so much for all the feedback! This is great info and I truly appreciate you taking the time to help me! It's still pretty overwhelming, but we'll see what the next appointment brings...

[beachbirdie]

I just want to emphasize what the other poster said about your biopsy. It is extremely important that you do not let a negative biopsy steer you away from a gluten-free diet.

The likelihood of a false positive on your blood test is so slim that some docs would stop there with a diagnosis, and not go on to do a biopsy. In this case, the biopsy will just show how advanced the damage is, not just that you have the disease. You might have caught it early enough that you have not suffered much damage.

You do, however, need to continue eating gluten until after the biopsy should you decide to go through with that test.

Welcome, by the way!

[Cara in Boston]

Welcome -

The only tip I can add is to take this time before your appointment to read all you can about Celiac Disease so that you will be well informed. Just in case you get an idiot doctor who does not know enough about it or who hasn't had a single patient with it . . . the better informed you are, the better you will be able to understand what is going on (and know if you have an idiot or not). I had our local librarian pull books for me from different neighborhood branches - there are a lot out there.

Write down all your questions so you don't forget them when you go to the GI doctor. Get copies of all your test results and bring them with you. Our first visit to the GI consisted of nothing more than repeating the blood tests and more waiting . . . then they scheduled the endoscopy.

Also, since you will likely be going gluten free after your biopsy (DO NOT GO gluten-free UNTIL YOU ARE DONE WITH TESTING), take this time to sample some products and see what you like and what you don't. I couldn't just give up pasta at first, so it was important to find a brand of gluten-free pasta that I liked BEFORE I had to switch to it permanently. For my son, it was sandwich bread (for peanut butter and jelly) and we quickly found one we liked. You have a few weeks to think ahead - then, when the day finally comes, you won't be so overwhelmed.

After the endoscopy, I had an appointment with a nutritionist that was really helpful. When my son (7) was diagnosed, we attended a class led by a nutritionist together. It was helpful too. Since then, we have just been back for blood tests (at 6 months gluten-free) and we go in again next week for our one year anniversary.

This could be good news for you. For me, I didn't even know I was "sick" (just thought this is what it feels like to get old) and it is so great to be feeling good again.

Good luck -

Cara