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I Need Advice, Thinking I May Be Celiac Or At Least Gs.

knowledge228

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knowledge228 Newbie
knowledge228
Posted

So for my whole life I have had digestive problems.  I have always had chronic constipation, bloating and gas.  After my first son was born I really battled with PP depression and anxiety...and of course fatigue.  I just chalked it up to being a new Mom.  But since then things have just spiraled.  I have had debilitating joint pain, musculoskeletal pain, headaches, constant nausea, adult acne that will not go away, rashes, mood swings, poor sleep, chronic fatigue, reflux, blurry vision at times, heavy and sometimes irregular periods, hair loss and just basically feeling terrible!  I know this isnt a "classic" symptom but I have also been about 35lbs over weight and no matter what I do I can not lose it ( personal trainers, counting calories ect).  I seem to drag myself through my day and to me this is not how I envisioned my 30's feeling like.

 

I previously did an alkaline diet and felt pretty good, but my father fell ill and I got away from taking care of myself and focused on him.  Recently my sister, who has the same type of symptoms as myself, decided to go to GI for testing.  She has not had hers completed, however she suggested that I be tested as well.  So a about a six weeks ago ago I went gluten free-no more bloating, gas or stomach pain, but I did feel very tired and had a constant headache and developed dark areas under my eyes.  My skin looked better overall though. I was gluten free for about 2 weeks and went on vacation and blew it basically, on day 4 of the gluten binge I had uncontrollable itching and broke out in a rach that looks like DH in the creases of my arms and nect.  Since then I scheduled and appt and stayed on gluten for the tests, but I dont want to get laughed out of the GI's office.   I have been Dx with vertigo, fibromyalgia, peripheral neuropathy, piriformis syndrome and SI joint dysfunction, hair loss, postpartum thyroiditis, depression and anxiety, low vit D, low Mag, and low Ca.

 

Advice?  Should I get tested?  I know it affects everyone differently but what does it sound like to you guys.  I am a little confused considering I didnt feel so great after going gluten free. Thanks.

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nvsmom Community Regular
nvsmom
Posted

Welcome to the board.  :)

 

You might as well get tested because so many of your symptoms could be attributed to celiac disease. Because you already have thyroiditis (Hashimoto's?), you are more likely than the regular population to get celiac disease - autoimmune problems tend to run in packs.

 

If you get tested, try to get the full test panel run. Celiac tests are not fool proof and can miss as many as 1 out of every 4 celiacs. If you have many tests done, the celiac disease is more likely to get caught.

 

Here is the full panel to be run after 2-3 month of eating gluten:

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

total serum IgA (a control test)

AGA IgA and AGA IgG (older and less reliable tests)

 

If all the tests are negative, you may want to consider going gluten-free for a few months to see if non-celiac gluten sensitivity (NCGS) is an issue for you - it has the same symptoms as celiac disease but is more common and not detectable by blood tests.  I know you said that you didn't feel great gluten-free but many people do feel worse in the first few weeks; withdrawal is a problem for about 1 in 3 celiacs and it can make the first few weeks really miserable with increased fatigue, moodiness, headaches, pain, and stomach issues.  During that time some things might improve quickly (usually stomach aches and bloating) but other symptoms can take weeks, months or even years before they improve with the gluten-free diet.  If you give the diet another trial (after testing) make sure it is about 6 months long and keep a food and symptom journal to help you keep track of the slow changing symptoms.

 

When you see the GI, bring your list of symptoms, including your nutritional deficiencies and previously diagnosed problems as many of those can be attributed to celiac disease as well. 

 

You might want your thyroid checked out again too. When my thyroid was not well treated, my thyroiditis symptoms were very similar to celiac symptoms.  In my experience a TSH close to 1 is good (regardless of lab range), free T3 and free T4 should be in the 50-75% range of your lab's normal reference range, and TPO Ab should be low.... This is just based on my own experience and research though, I'm not a doctor.

 

Best wishes.  :)

knowledge228 Newbie
knowledge228
Posted
  • Author

Welcome to the board.   :)

 

You might as well get tested because so many of your symptoms could be attributed to celiac disease. Because you already have thyroiditis (Hashimoto's?), you are more likely than the regular population to get celiac disease - autoimmune problems tend to run in packs.

 

If you get tested, try to get the full test panel run. Celiac tests are not fool proof and can miss as many as 1 out of every 4 celiacs. If you have many tests done, the celiac disease is more likely to get caught.

 

Here is the full panel to be run after 2-3 month of eating gluten:

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

total serum IgA (a control test)

AGA IgA and AGA IgG (older and less reliable tests)

 

If all the tests are negative, you may want to consider going gluten-free for a few months to see if non-celiac gluten sensitivity (NCGS) is an issue for you - it has the same symptoms as celiac disease but is more common and not detectable by blood tests.  I know you said that you didn't feel great gluten-free but many people do feel worse in the first few weeks; withdrawal is a problem for about 1 in 3 celiacs and it can make the first few weeks really miserable with increased fatigue, moodiness, headaches, pain, and stomach issues.  During that time some things might improve quickly (usually stomach aches and bloating) but other symptoms can take weeks, months or even years before they improve with the gluten-free diet.  If you give the diet another trial (after testing) make sure it is about 6 months long and keep a food and symptom journal to help you keep track of the slow changing symptoms.

 

When you see the GI, bring your list of symptoms, including your nutritional deficiencies and previously diagnosed problems as many of those can be attributed to celiac disease as well. 

 

You might want your thyroid checked out again too. When my thyroid was not well treated, my thyroiditis symptoms were very similar to celiac symptoms.  In my experience a TSH close to 1 is good (regardless of lab range), free T3 and free T4 should be in the 50-75% range of your lab's normal reference range, and TPO Ab should be low.... This is just based on my own experience and research though, I'm not a doctor.

 

Best wishes.   :)

Thank you for info. I was told my thyroiditis had resolved on its own even though I suffer some of the same symptoms as when it was inflammed.  No one has ever tested me for Hashimotos.  I have noticed that when I eat glutne now my heart starts pounding, and I sometimes get sweaty.  IDK, I am just hoping the doc will test me.

nvsmom Community Regular
nvsmom
Posted

Getting a diagnosis is one of the most stressful parts of this disease. Hang in there.

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