I Think I Have Celiac

[jklatt]

Hi,

I am new to this forum and to Celiac, but I was looking for some help from someone who may know if it sounds like I have Celiac. Here's my story.

I think I have probably had this intolerance all my life, but I believe it's slowly gotten worse over the last few years, so I will start with after I had my first son. I had gained a ton of weight with my pregnancy 7 years ago. I am 29 now and so I was only 21 when I was pregnant with my 1st. I gained 80 pounds and had preclampsia during the pregnancy. After I having him I desperately needed to lose weight. I had just heard about the atkins diet and decided to give it a try. After only 3 months I had lost about 40 pounds and felt great!! I had maintained that way of life for better than a year and only had gained a little weight back after reverting back to normal food. I started my next pregnancy at that weight and gained another 50 pounds and once again had preeclampsia! However after this pregnancy something changed. I ended up getting postpartum thyroiditis. The doctors told me it would clear up after a while and so they didn't treat. For the first month I was hyperthyroid and lost 25 pounds, and after that I was hypothyroid and gained some of the weight back.

So that was 4 years ago now since my last pregnancy and in that 4 years I have had the same symptoms over and over. First I feel hyperthyroid and then hypothyroid. My weight is like a yo yo...up and then down. I have consistently gone to the doctor every 6 months or so. I get the thyroid tests done at least once a year. They have always told me that my tests were "normal". Even though my body temp was NEVER above 97, unless I was ill and my blood pressure is pretty low. I had every symptom of thyroid problems, but the test were ALWAYS normal. They decided I was just depressed and I went on almost every known antidepressant known to mankind, before deciding I wasn't going to live like that!

That brings me to this past December (08). I had once again gotten symptoms of fatigue and depression...weight gain. I felt horrible. I went in to a new doctor at a new clinic. He ran the thyroid tests and hormone tests. Finally something showed up. First my testosterone level went from 28 to 69 in one year. It's still in "normal range" but a huge jump. So that's problem no. 1. Secondly all my thyroid tests once again were normal...with the exception of the antibody test. It was elevated and so the doc thought that I had subclinical thyroiditis. But decided to treat me for testosterone levels and depression because he wasn't sure what was causing me to feel horrible. I said yes to the meds for the hormones but said no to the antidepressants. I treated that for 2 months before I started to feel awful again. I lost 6 pounds in one week, my heart was racing, I couldn't catch my breath and I was so shaky. I went back in and again got tested...and again normal, except for that one test. The doc. put me on thyroid medicine and basically said if this doesn't work then I just don't know. :-(

I felt so frusterated...wondering is this just in my head? That's when I found an article about Celiac and antibodies. I have been reading so much and I think this is the answer, but I'm sure my doc will just dismiss it all and I'm terrified that he won't even acknowledge it. I gave up on gluten only a day ago and overnight I lost 5 lbs. of just water. I need something to help in the worst way. I also stopped taking the synthyroid, but I am wondering if anyone else has had something like this happen to them...I am not sure what to do. What are the tests for Celiac? I already know that I have the antibodies, and I'm sure I have the symptoms (fatigue, depression, joint pain and stomache upset-diarrhea and then constipation) but any opinions would be awesome.

I also think my oldest son may be intolerant to gluten...what are the things to look for in kids around the age of 7?

Thank you so much and I'm sorry this is so long winded!!

[wendstress]

I'm new to Celiac and can't answer your questions, but I can offer a few thoughts:

1) I believe my second pregnancy likely triggered Celiac Disease in me.

2) Go Gluten free for a few weeks and see how you feel..... Undestand though, that if you do have Celiac, there will be ups and downs as it takes a long time for the intestine to feel.

3) Specifically request your Dr. to run the Celiac Panel. Remember, you are the customer! Also remember that you need to be consuming Gluten when you are tested, or else you'll have negative test results.

4) My symptoms were chronic fatigue, depression, abdominal cramping, and diarrhea.

5) Apparently (I'm not an expert, nor am I trying to be - please check this out) a lot of people with Celiac can also have Thyroid issues.

[RiceGuy]

Welcome to the board! I'm sure you'll get a lot of answers here.

Your symptoms certainly could be caused by Celiac. If you intend on getting tested, it is recommended to continue eating gluten up until the tests are done. You can probably try the gluten-free diet for about a week, then go back to eating gluten. Since the antibodies usually begin to decline at about two weeks, it's advisable not to remain gluten-free that long, or the tests will likely be negative no matter what. If you feel better in that one week, you may already have the answer you seek.

There are others on this board more knowledgeable about the tests than myself (I'm self diagnosed). However, some good info can be found here: Open Original Shared Link

As the other poster mentioned, thyroid troubles and Celiac often go together, so that symptom isn't unusual either.

No matter what the results of any tests, it is always a good idea to try the diet and see how you feel, since the best tests are still not very accurate, and often give false negatives. Additionally, you may need to avoid other top allergens, at least until the body heals. Dairy is the one which most often causes trouble, so it may help to avoid that even if you don't notice symptoms from it. Soy, corn, eggs, nuts, etc can all be troublesome, so do watch out for those. Many on this board have found it necessary to avoid nightshade foods too, as the damaged gut is more permeable, allowing a higher percentage of the toxic alkaloids into the bloodstream. Those alkaloids can impair muscle nerve function, and cause pain/numbness. Keeping a food journal is a good way to track what you've eaten verses how you feel. It can sometimes take days for a symptom to show up after ingesting a certain food.

[jklatt]

I can honestly say since stopping the gluten in my diet on Monday...today being Thursday I feel pretty good. Other than a fever for some odd reason. I am not tired like I was nor am I craving carbs like crazy. I feel much more peaceful. Thanks for all the help. I had thought about going to the doctor, but honestly I don't need them to give me a confirmation of the fact that I have this. Just feeling better is all I need to decide. Now, for my son...I will have him tested because it would turn his little world upside down. But pretty sure it's the same for him.

Thanks again!

[jklatt]

I can honestly say since stopping the gluten in my diet on Monday...today being Thursday I feel pretty good. Other than a fever for some odd reason. I am not tired like I was nor am I craving carbs like crazy. I feel much more peaceful. Thanks for all the help. I had thought about going to the doctor, but honestly I don't need them to give me a confirmation of the fact that I have this. Just feeling better is all I need to decide. Now, for my son...I will have him tested because it would turn his little world upside down. But pretty sure it's the same for him.

Thanks again!

So, I was tested for celiac and my panel came back negative :-(...however I have been gluten free for 2 weeks today and have lost weight and have felt so much better. I am not suffering from my allergies anymore, my eyes aren't red all the time, my stomach is finally not disagreeing with me. On Tuesday last week I accidentally had a glutened creamer in my coffee and was sick almost instantly...I just can't understand why my panel would be negative. I wanted it to positive because I am tired of trying to figure out why I am so unhealthy. Is it possible that I have it, but after a week of of not eating gluten it would give a neg. result? I know that we aren't doctors, but I am at a loss. I guess deep down I am afraid my doctor thinks I have lost my mind and am some kind of hypochondriac! Please help with any advice or personal stories....

Thanks

[ThePhilly's]

So, I was tested for celiac and my panel came back negative :-(...however I have been gluten free for 2 weeks today and have lost weight and have felt so much better. I am not suffering from my allergies anymore, my eyes aren't red all the time, my stomach is finally not disagreeing with me. On Tuesday last week I accidentally had a glutened creamer in my coffee and was sick almost instantly...I just can't understand why my panel would be negative. I wanted it to positive because I am tired of trying to figure out why I am so unhealthy. Is it possible that I have it, but after a week of of not eating gluten it would give a neg. result? I know that we aren't doctors, but I am at a loss. I guess deep down I am afraid my doctor thinks I have lost my mind and am some kind of hypochondriac! Please help with any advice or personal stories....

Thanks

Did you get your son tested as well? If so, what was the outcome for him? My son, also 7, had the blood test done in Feb of this year. We had suspected celiac for quite some time. He often complained of his stomach hurting and went from diarriah to constapation, his tummy was visably distended and hard quite a bit of the time. His color was gray every now and then as well. He also had a hard time keeping his focus in school (I know first hand as I work in his school). We started really watching what kinds of things he was eating and decided to try him on lactose free milk first, then after his symptoms continued (the milk did help a little bit) went and had him tested. We weren't surprised when the office called to say that he was most certainly suffering from celiac. Then we thought we'd better get the rest of the family tested, since it does run in families. We were totally shocked when the results came back that his older brother and younger sister and myself (his mom!) were positive as well! From the reading that I've done on Celiac recently, it is quite possible to have a false negative (not so with a false positive) so if you are feeling much better on a gluten free diet, I would stick with it for sure. I have a hard time because I did not have any symptoms at all and sometimes I think I don't suffer from eating these nice gluten filled things. I don't though, because I'm trying to be a good example for my 3 kidlets, and I know it's not good for me in the long run. I would love to know about the results for your son!

[jklatt]

I have not had my son tested yet because he is "freaking out" about getting blood drawn and I feel horrible for putting him through it. Ironically last night he was having a very bad night after all the Easter goodies and was very very emotional and things. Him and I talked last night and he asked if he could try switching the way he eats because he feels sad all the time....I felt really bad. So today he was off of school and we are trying the new gluten free diet. I think if it helps after a week and I see a difference then I will try to persuade him to go in and be brave....after going back on gluten of course. I am so certain that I have it, but I just worry that the docs will keep not finding anything. I put a call in to my doc today to get copies of my lab work so I know what they came back as...perhaps I can post some numbers and maybe someone can shed some light on things that may seem a little "off".