Does This Sound Like Celiac Disease?

[jshelton999]

Hi everyone! I just signed-up here and after reading so many posts I have a strong suspicion that celiac disease might just be the missing piece of the puzzle to my health problems for the last 10-20yrs or even longer. I’m 54 yrs old. I was diagnosed with Hashimoto’s hypothyroidism in 1989 and complete pituitary failure (autoimmune panhypopituitarism) in 2001. I also have sleep apnea, asthma and allergies. However, the pituitary disorder was reversed in 2008 after a long process of slowly withdrawing from Cortef (hydrocortisone) used to treat the adrenal insufficiency component. I took my last dose of Cortef Nov 30, 2008. In January, I developed a sinus infection that lasted over 5 weeks despite antibiotics. Since then I’ve been sick with symptoms consistent with celiac:

- profound fatigue and malaise

- sick to my stomach

- 6-10 bowel movements a day – foul-smelling, sometimes floating

- itchy, burning skin rashes on my scalp, back of my legs, elbows, butt and back

- severe vitamin D deficiency

- increased insomnia

- teeth deteriorating at a rapid rate

- unusual (for me) cravings for fatty food and ice cream

- low thyroid levels (TSH = 13) although I take Synthroid

My doctors haven’t been able to figure things out – especially since my lab tests confirmed pituitary function is still normal and cortisol levels normal, confirming that the pituitary disorder truly has been reversed. The episodes of fatigue/sick stomach/skin rashes have occurred frequently over the last 10+yrs but declined somewhat after beginning full hormone replacement therapy in 2001. So I’d assumed they were always related to the pituitary disorder… But now that they have returned with a vengeance with a normal functioning pituitary I’m thinking that they were never caused by the pituitary disorder in the first place… And I have to say that even when all my hormone levels were normal I never felt well. There were many times I felt less sick, but I haven’t really felt well since 1995.

Here’s my theory:

1. Celiac disease was the main factor behind the fatigue, sick stomach and skin rashes

2. Celiac disease was a contributing factor in the development of the thyroid and pituitary disorders.

3. Since Cortef is an anti-inflammatory drug it offset inflammation due to Celiac and this helped me feel better and perhaps also helped ‘calm-down’ an overactive immune system thus mitigating the frequency and severity of the skin rashes.

4. Due to withdrawal from Cortef (last dose Nov 2008) celiac is no longer being masked by medication and thus is surfacing full-force.

5. Celiac has been a key underlying cause of the unexplained episodes of fatigue/stomach issues which first occurred in 1974.

6. Celiac disease was a key factor in the dramatic increase of sinus infections and allergy/asthma issues that have occurred in the last 13 yrs.

I’m scheduled for an endoscopy/colonoscopy May 12 but I’m anxious to know what you think. Does it sound very likely that I have celiac disease? Could celiac make me feel so profoundly fatigued and sick to my stomach that at times I've felt like checking myself into the hospital? Any other condition that might cause the same symptoms? BTW – Lab tests showed normal liver and kidney function and blood counts were normal. I also had an abdominal ultrasound last year that didn’t show any abnormalities.

Thank you so much for your feedback.

BTW - The pituitary disorder was assumed to be autoimmune related because the MRI did not show a tumor. My current endo thinks the condition was induced by steroid-based asthma meds although my allergy doc said my medical records shows I wasn't taking any steroid-based meds in that time period.

Jim

[MaryJones2]

Those symptoms are certainly some of the most common. Many of us also have Hashimoto's. It sounds like your doctors are following the right path so hopefully you'll find your answer soon. Regardless of your test results, you can try the gluten-free diet after your endoscopy and see if it helps any of these symptoms.

[jshelton999]

Those symptoms are certainly some of the most common. Many of us also have Hashimoto's. It sounds like your doctors are following the right path so hopefully you'll find your answer soon. Regardless of your test results, you can try the gluten-free diet after your endoscopy and see if it helps any of these symptoms.

Thanks Janet!

I'm going on the gluten-free diet right after testing regardless of the results! I'm convinced it'll help a lot.

Jim

[jshelton999]

UPDATE - Had the endoscopy/colonoscopy on May 12. Doc said everything looked normal and that biopsies and blood tests were negative...

HOWEVER, I started the gluten-free diet the next day and have improved dramatically, although I've still had a few episodes of sudden fatigue/malaise/sick stomach after eating. And on most days I still have the scenario where I feel sick to my stomach when I first wake-up, followed by 2-3 bowel movements within an hour. Then I tend to feel better as the day goes on. I've noticed that when I feel sick to my stomach the stool color is tan but when I feel better it changes to the normal brown color.

Does this positive response to the gluten-free diet mean it's either celiac or gluten-intolerance? Also, the previously 'on-fire' skin rashes on the back of my legs, butt and scalp have stopped burning and only itch occasionally.

BTW - I did some weight-training a couple of days last week and after one of the sessions crashed bigtime.

Anyway, I'm trying to figure out where to go from here. If it's a gluten-related disorder then fine - I'll just stay on the diet. But without a positive test I'm concerned something is being missed and I'll waste a lot of time waiting to get well. So what do you think?

Thanks, Jim

[nasalady]

UPDATE - Had the endoscopy/colonoscopy on May 12. Doc said everything looked normal and that biopsies and blood tests were negative...

HOWEVER, I started the gluten-free diet the next day and have improved dramatically, although I've still had a few episodes of sudden fatigue/malaise/sick stomach after eating. And on most days I still have the scenario where I feel sick to my stomach when I first wake-up, followed by 2-3 bowel movements within an hour. Then I tend to feel better as the day goes on. I've noticed that when I feel sick to my stomach the stool color is tan but when I feel better it changes to the normal brown color.

Does this positive response to the gluten-free diet mean it's either celiac or gluten-intolerance? Also, the previously 'on-fire' skin rashes on the back of my legs, butt and scalp have stopped burning and only itch occasionally.

BTW - I did some weight-training a couple of days last week and after one of the sessions crashed bigtime.

Anyway, I'm trying to figure out where to go from here. If it's a gluten-related disorder then fine - I'll just stay on the diet. But without a positive test I'm concerned something is being missed and I'll waste a lot of time waiting to get well. So what do you think?

Thanks, Jim

Hi Jim,

Yes, if your gastro and dermatological symptoms are improving on the gluten-free diet, you either have celiac disease or are gluten-intolerant. Wheat allergies generally don't have the same symptoms as celiac disease or NCGI. Doesn't matter that all of your tests are negative; you could still have celiac disease. In this particular situation the thing to pay attention to is your body, not the medical tests, even though they can prove to be useful at times.

The gluten free diet is not harmful, and will NOT heal you if you are not gluten-intolerant/celiac. So nothing will be missed.

If you want to REALLY convince yourself, try going back to gluten after being gluten free for several weeks or months. If you get sick with all of your old symptoms, then you know!

Anyway, I wish you the best of success, whatever you decide to do.

JoAnn

[Sliver]

If you do go gluten free don't forget to have your pharmacist check with the manufacturer of any medications you currently take for gluten content. I was surprised to find some commonly prescribed acid blockers and many other medications that potentially contained gluten. I had to drop two of the ones I was on.

Good luck! I do believe there is a solution out there for you, getting there, however, may take a bit.