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90% Sure I Have Celiac Disease, Have Not Gotten Tested, Advice Please
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10 posts in this topic

First post here.

 

The last two years I have been having weird issues with my body that I couldn't explain. These all started when I moved away from home for college(moved at 19, now am 21). The only thing that I've ran across to explain all these symptoms is celiac disease.

 

I have eczema which hasn't been much of a major issue until I moved to my college town where I had outbreaks that were by far the worse in my life and this is where all my problems started.

 

My skin became extremely dry, I started losing hair off my head and I had this insane dandruff that required special care to maintain. My head would itch so bad at night sometimes I couldn't sleep. I got these treated with prednisone and steroidic creams which eventually brought it under control. I also developed acne which I NEVER had in my life before either. 

 

Soon after I started passing bloody stools. My doctor told me I was passing these bloody stools because my skin was very dry and a rough stool just caused some anal tearing. The thing is, I'd pass some stools that were extremely soft (diarrhea like) and there would be blood in them. Sometimes the stool would appear normal until I went to wipe and the toilet paper would just be bloody red. I had problems with this on and off for two years and just combated it by trying to include more antioxidants in my diet such as apples. 

 

Next, right before I started having issues with my sleeping patterns and vitality I developed this allergic reaction to alcohol which I never had experienced in my life before. As soon as I had anything to drink my eczema would get very agitated and turn red, I seemed to have sort of a mini hot-flash and I would become very itchy. This had never happened to me before then.

 

Now, where I really started having a downfall was I started sleeping through my alarm clocks one day and just seemed to have a general lack of direction. I started being late for class, it was hard to pay attention, be dilligent with my assignments and as a result my grades started to suffer. I thought this was typical end of the semester laziness but it continued. I felt like I needed to get 12 hours of sleep everyday, otherwise I would be tired. This all started occuring Spring 2012. 

 

I thought having all summer to recover would be the solution and well I was wrong. I slept 12 hours everyday, sometimes more and I still felt sleepy. I thought when school started (fall 2013) I'd snap out of it and get back to my normal self but I didn't The first day of class was like the last day of the following semester, I couldn't focus and I still would have to get 12 hours of sleep a day. Doing shit that was once very easy for me became harder, moving my belongings by myself and registering for my classes, etc. Eventually I started having depressive episodes and I had enough. I got a medical withdrawal and moved back home to focus 100% on what was wrong with me.

 

At first everyone just diagnosed me with depression (which runs in my family) and I went on medication. It slowly started helping with my depressive episodes but I would still sleep 12+ hours a day and still be tired after waking up. This whole time I'm trying different diets and doing things like going to the gym. Still didn't solve my problem and I got another blood test done which showed my thyroid levels to be abnormally low so then I started on thyroid medication which helped me some but still didn't return to 100%. I could function off of 8 hours of sleep and I wouldn't always be tired. I would have to set an alarm clock otherwise I would continue on to sleep 12 hours. Before I started having all these issues I could have easily went off 6 hours of sleep with no alarm clock, just naturally waking up and feeling fine. 

 

Alright so after a few months of being on Wellabutrin + Levothyroxane I had eliminated my depression and being sluggish all the time. However, it was still very hard for me to get motivated for anything or care about anything. I still wasn't back to how I was before, I was still a more independent human being at age 19 than I was at 21. I was out of things to try and this saddening realization set in where I knew I couldn't live the rest of my life like this, being so empty and lazy.

 

I finally came across this post on Reddit to a person who seemed to have experienced something very similar to what I am going through and so I messaged them. I gave them a long story, longer than this post and they told me it seemed like I was a text book case of celiac disease and so I looked it up. Everything seems to match up like a key. 

 

I started a gluten free diet immediately (7-28-13) and I really think I'm starting to feel better. It feels like my old sharpness and memory is returning and I can get myself motivated to do things but I want to be sure it's not placebo. It just seems so weird that I'd have something of this caliber and not know it my entire life and not have any relatives that ever reported being a celiac. 

 

I showed most of the symptoms though:

 

-Underactive Thyroid

-Depression

-Dry skin

-Losing hair

-Bloody stools

-Occasional abdominal bloating and pain

-Weight loss but then weight gain

-Fatigue

-Tingling numbness in hands and feet

-Skin rashes (when drinking alcohol)

 

It just seemed that if I had something so severe that could cripple me so bad it would be more obvious and not so subtle. Then I have no idea why I'd start having problems around 19-20 and never really before in my life. For the most part I started eating healthier once I got out on my own. One thing I did note that may have caused this to come out was I would eat a lot of bread from the restaurant "Ryan's". Around a dozen rolls a week, sometimes more.

 

I would just like to get feedback from people who really do have this and would really appreciate any reply.

 

Thanks.  

 

 

 
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Welcome to the board.

 

Your symptoms certainly could be celiac disease, those are fairly common symptoms. They are also still symptoms of hypothyroidism. In fact, I started thinking "thyroid" halfway through your post before I got to the fact that you do have a thyroid issue. In your case, I would look into testing both, especially since there is a link between celiac disease and thyroiditis.

 

The full celiac panel is:

  • tTG IgA and tTG IgG
  • DGP IgA and DGP IgG
  • EMA IgA
  • total serum IgA
  • AGA IgA and AGA IgG

The first three tests will indicate damage is happening to the small intestine (if they are positive). The total serum IgA is a control test to see if you make enough IgA for the IgA based tests to be accurate - 5% of celiacs don't.  The AGA tests are older tests that show gliadin sensitivity in celiac disease and in non-celiac gluten intolerance (NCGI) but they are not the most accurate tests in the world.

 

There is also the endoscopic biopsy where doctors actually look for intestinal damage.

 

If you are going to do any celiac testing, you must be eating gluten in the weeks prior to testing. For blood tests, the guidelines are 1-4 slices of bread per day (or equivalent) for 4-12 weeks, with 2 slices of bread per day for over 8 weeks being the average suggested gluten challenge. The biopsy requires a shorter time on gluten - two weeks or more.  Resume eating gluten immediately if you want to get tested.

 

As for the thyroid, I have thyroid problems too, and I know with myself that I did not feel better on levothyroxine (Synthroid). I still had almost all of the same symptoms even though my doctor said my labs were normal. My TSH went from 14 to about a 3 and I was still feeling poorly. I finally felt better when I tried natural desiccated thyroid (Erfa's Thyroid) at a full replacement dose (150mcg) my TSH is now at the bottom of the range and my free's are at the top.  My scaley skin on my legs turned smooth and soft (after 20 years of dryness), my energy level is rising, and it is easier to lose weight. My only downside has been renewed hair loss, but that seems to happen to me when I switch meds so I am hoping it will slow down soon.

 

From what I have learned, most people with a thyroid problem will not feel their best unless they get their TSH to about a 1, and their free T4 and free T3 are at 50-75% of your lab's normal reference range. TPO Ab will often fall for people on the gluten-free diet too; mine did although it wasn't excessively high to begin with. I think you should get your thyroid rechecked and get copies of all labs done. Don't trust the doctors when they say you are fine - all they mean is that your labs appear normal like 95% of the population's does, but the problem with hypothyroidism is that almost 10% of all people deal with it so half of the thyroiditis patients' labs fall within the normal range. Normal labs does not always means you feel normal/well.Recheck all of you labs, and make sure they run the correct tests (free T4 and free T3 and not just T4 and T3).

 

Good luck with the testing! I hope you find some answers soon.

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My problems seemed just as sneaky.  I have celiac disease diagnosed after 30 years of symptoms.  I was diagnosed on the basis of response to the gluten free diet, symptoms visable at 3 weeks gluten free, and an overwhelmingly positive genetic test.  After those I had nutrient tests which showed me to be very deficient in many nutrients in spite of a very good diet.  I also had intolerances to nearly all of the foods I had been eating.

 

My symptoms included extreme fatigue that didn't respond to rest and brain fog. I also had bloating in my late teens These took off after a bout with mono, so I didn't realize what was happening.  I just thought I was getting a little heavy as I passed 20.  Funny though, sometimes I looked so skinny.  The way I knew that I had brain fog was cause it went away one day.  That is because vitamins I took helped it.

 

I have been gluten free 18 months.  I am getting better. My last nutrient test showed only one or two nutrients low.  I tried two months ago testing my health practitioner if it could be a mistake that I have celiac.  She asked if I was getting better.  She said I had the Cadillac of tests.  After 18 months I am still incredulous.  Still thinking  really?  It sure does explain a few things, though..

 

I am hoping you will get rested and better soon.  If you have a gluten intolerance, I hope you find out for sure. 

 

Get well soon,  ***

D

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Welcome to the board.

 

Your symptoms certainly could be celiac disease, those are fairly common symptoms. They are also still symptoms of hypothyroidism. In fact, I started thinking "thyroid" halfway through your post before I got to the fact that you do have a thyroid issue. In your case, I would look into testing both, especially since there is a link between celiac disease and thyroiditis.

 

The full celiac panel is:

  • tTG IgA and tTG IgG
  • DGP IgA and DGP IgG
  • EMA IgA
  • total serum IgA
  • AGA IgA and AGA IgG

The first three tests will indicate damage is happening to the small intestine (if they are positive). The total serum IgA is a control test to see if you make enough IgA for the IgA based tests to be accurate - 5% of celiacs don't.  The AGA tests are older tests that show gliadin sensitivity in celiac disease and in non-celiac gluten intolerance (NCGI) but they are not the most accurate tests in the world.

 

There is also the endoscopic biopsy where doctors actually look for intestinal damage.

 

If you are going to do any celiac testing, you must be eating gluten in the weeks prior to testing. For blood tests, the guidelines are 1-4 slices of bread per day (or equivalent) for 4-12 weeks, with 2 slices of bread per day for over 8 weeks being the average suggested gluten challenge. The biopsy requires a shorter time on gluten - two weeks or more.  Resume eating gluten immediately if you want to get tested.

 

As for the thyroid, I have thyroid problems too, and I know with myself that I did not feel better on levothyroxine (Synthroid). I still had almost all of the same symptoms even though my doctor said my labs were normal. My TSH went from 14 to about a 3 and I was still feeling poorly. I finally felt better when I tried natural desiccated thyroid (Erfa's Thyroid) at a full replacement dose (150mcg) my TSH is now at the bottom of the range and my free's are at the top.  My scaley skin on my legs turned smooth and soft (after 20 years of dryness), my energy level is rising, and it is easier to lose weight. My only downside has been renewed hair loss, but that seems to happen to me when I switch meds so I am hoping it will slow down soon.

 

From what I have learned, most people with a thyroid problem will not feel their best unless they get their TSH to about a 1, and their free T4 and free T3 are at 50-75% of your lab's normal reference range. TPO Ab will often fall for people on the gluten-free diet too; mine did although it wasn't excessively high to begin with. I think you should get your thyroid rechecked and get copies of all labs done. Don't trust the doctors when they say you are fine - all they mean is that your labs appear normal like 95% of the population's does, but the problem with hypothyroidism is that almost 10% of all people deal with it so half of the thyroiditis patients' labs fall within the normal range. Normal labs does not always means you feel normal/well.Recheck all of you labs, and make sure they run the correct tests (free T4 and free T3 and not just T4 and T3).

 

Good luck with the testing! I hope you find some answers soon.

 

Thank you for the reply.

 

I didn't care about getting tested because my experience with doctors has just been so lousy...every problem I have to suggest, if it wasn't for my own research I never would have gotten the blood test for hypothyroidism. I'm sick of going in and out of doctor's offices. My TSH was 5 and I was told it went back to 1, I've been tested 3 times and they told me it was fine. Although, I'm very interested in the natural substance you tried.

 

Also, I figured Hypothyroidism was a symptom of celiac which is what all the problems I've been having feel like, symptoms.  

 

Can you tell me more information about this other thyroid medication you tried?

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Thank you for the reply.

 

I didn't care about getting tested because my experience with doctors has just been so lousy...every problem I have to suggest, if it wasn't for my own research I never would have gotten the blood test for hypothyroidism. I'm sick of going in and out of doctor's offices. My TSH was 5 and I was told it went back to 1, I've been tested 3 times and they told me it was fine. Although, I'm very interested in the natural substance you tried.

 

Also, I figured Hypothyroidism was a symptom of celiac which is what all the problems I've been having feel like, symptoms.  

 

Can you tell me more information about this other thyroid medication you tried?

 

I hear you about doctors not catching issues. I first went to the doctor for what was probably celiac disease, when I was in early elementary school - I still remember the doctor saying that I was just one of those people who got stomach aches after they ate.  As for my hypothyroidism, I first started having problems in my early 20's but unlike you, I wasn't educated in thyroiditis and I let them dismiss my slightly elevated TSH. I figured out my celiac disease and I pushed to get my thyroid retested ... In my view, doctors are useful for: 1) their prescription pad, 2.) when you need a surgical fix, and 3.) when you are critical - in which case you probably need a surgical fix or their prescription pad.  LOL  They are pretty useless for many chronic conditions or for gaining overall good health... Just my personal opinion though.

 

Levothyroxine wasn't working for me, and I tried it for most of a year. I'm guessing that I needed more than just the T4 hormone that it provides. Natural desiccated thyroid is actually pig thyroid (a bit of an odd idea but I'm a pork fan so I go with it). Because it is actual thyroid, it contains all of the usual hormones that our own thyroid releases but in a slightly differing ratio. As well as having T4, it has T3, T2, T1, and calcitonin. I think it is the addition of the T3 (the active thyroid hormone in our body) that is making the difference. It could be because my body can't convert T4 to T3 very well, or perhaps I have a mild resistance to T3, but whatever the case, it has made a real difference for me.

 

This site is very pro NDT, but it has good information about it. http://www.stopthethyroidmadness.com/

 

There are quite a few books on it too. Thyroid books seem to be in one of two camps. They are either pro NDT or push synthetic T4 only. Try your local library and you'll see what I mean.  :)

 

NDT is usually prescribed by the name Armour but up here in Canada, the company Erfa makes "Thyroid" which is almost the same thing. You will need a doctor's prescription to get it, and not all doctors like it. My own doctor said it was outdated and that his "scientific mind" would not allow him to prescribe it.  :rolleyes:

 

I suggest doing some reading, know you free T3 levels, and make a list of complaints and take it to your doctor when you go to request celiac tests (if you do). You are right that hashi's and celiac disease are linked. My TPO antibodies did go down while I was on the gluten-free diet - could be a coincidence but who knows.

 

Good luck, and feel free to ask lots of questions - there are a lot of people around here who have experienced similar things as you.

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Very similar things happened to me when I started college about ten years ago. The most noticeable problem for me, though, was the bloody stool. My doctors just couldn't believe that I hadn't left the country or been exposed to some kind of parasite. Fast forward 4yrs and a doctor finally decided I needed a colonoscopy. They discovered I have ulcerative colitis. Four years of bloody diarrhea with occasional mucous and I FINALLY had a diagnosis!!

Fast forward 6 more years and doctors have done little more than put me on meds and hope for the best. I finally went to an alternative type of doctor who has really focused on my diet. She had me give up wheat, dairy, soy, processed sugar and alcohol. Whereas my gastro insists that studies show diet doesn't affect UC...... I feel 100x better!!

I'm not sure if I have celiacs, but I have had some similar symptoms (minus the hair falling out and eczema), with no symptoms until after I was 19. It has been a 10+ year battle for me to figure out what is wrong and how to fix it. I hope you can get real help much sooner than that! But in the meantime, if changing your diet has helped, I think you should stick to it! And if at all possible, I suggest seeing an alternative/holistic type of doctor to see if they can help relieve your symptoms and possibly nail down a definite diagnosis.

One more thing, I also suggest giving up sugar. If you can, try to do a month without any (even natural sugar, like honey and fruit) and then slowly reintroduce the natural sugars. You might be very interested to see how it affects all of your symptoms. Good luck!!

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1desperateladysaved could have written my story...  Almost exactly what I went/am going through!  I have had stomach issues, eczema, etc my entire life and all the doctors claimed I had IBS.  I was a slave to Immodium  and knowing where the nearest bathroom was.  I got tested for food allergies 2 years ago and have a TON of intolerances/sensitivities (sugar, dairy, wheat, hops, fruits, veggies, spices, etc) and I was floored.  I cut them all out cold turkey and immediately felt better, lost 8 lbs in 10 days and the stomach issues almost disappeared.  I fell off the wagon and started eating some of those things again, in moderation, and started to feel sick again.  I got retested a month ago and again, I was floored with the results.  I was intolerant/sensitive to all the new things I was eating (I had decided to go sugar/dairy/egg/gluten/alcohol/pop/processed food-free two months prior) and that's when the dr. said he believed I had leaky gut syndrome.  I am still eating very clean and still feel like crap, but not nearly as bad as before.  I went to a GI dr. 2 weeks ago and took the genetic blood test for Celiac and tested positive for both genes and am going to schedule an Endoscopy in 2 weeks.  The GI dr. said that I have Celiac based on my test results and my other symptoms but wants to take a biopsy to see how badly damaged my intestine is.  I have had severe anemia, eczema, tummy issues, vitamin deficiencies, etc my entire life and no one could ever figure it out.  I gave up... Until recently.  Because I am gluten-free, I cannot be tested for the Celiac panel but I refuse to eat gluten for 8 weeks to confirm what I and two other doctors already know.

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  I went to a GI dr. 2 weeks ago ...am going to schedule an Endoscopy in 2 weeks.  .  Because I am gluten-free, I cannot be tested for the Celiac panel but I refuse to eat gluten for 8 weeks to confirm what I and two other doctors already know.

 

 

If you have been gluten free, you may see no damage with the Endo biospies.

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Karen, that is why I am debating on not doing the procedure at this time.  I have been avoiding everything for over 4 months now and hope that I am on my way to healing my gut.  Insurance covers it but it's a day off of work and a hassle for maybe nothing.  The GI dr. already told me it's safe to assume that I have Celiac based on my blood work and symptoms. 

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Though I totally understand frustration with doctors, I wouldn't skip them entirely. I went to every type of doctor I could think of for more than 20 years before I finally figured out that gluten and I were not friends.

But at the very least get your hormone levels tested and have tests run for vitamin deficiencies. If you have hypothyroidism, you may want to supplement some hormones so that you feel better. I've heard of people's thyroid issues improving after being gluten free for a long time, but in general, the thyroid is one of the organs that doesn't heal very well after the damage has been done.

And vitamin deficiencies are really common for those with gluten issues of any sort because of malabsorption. And even if they are just low in the normal range, they could be causing some of their own symptoms. Multivitamins can't help for some deficiencies because they just don't contain enough of what is needed, and they could cause you to have too much of those that you don't need to supplement, also not a good thing. (Make sure you get gluten-free supplements if you do end up needing something.)
 
Just removing gluten alone may not be enough to fully heal.

That said, I do hope that going gluten free has started to help and glad you may have finally found the answer that doctors missed. I'll admit that I'm a little jealous that it only took you two years of symptoms. 

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    • This is EXACTLY what happens to me. It has twice now and both times was after both glutening episodes but once it was the day after and the other time it was a week and a half. So I'm still not sure if it's related or strange bug bites...

      Did they stop happening when she stopped being glutened? Did you decide they were definitely related? I'm really confused by this and would love to know whether to insecticide my house or....
    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
    • I was tested for the full panel, I believe. I had normal values for t-transglutaminase (ttg) igg,t-transglutaminase (ttg) iga, deamidated gliadin abs igg, deamidated gliadin abs iga, and immunoglobulin a qn serum.  
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