Atypical Celiac Disease

Celiac.com 05/10/2019 (originally published 10/08/2010) - After giving birth to my first son in 2003, my OB/GYN tested me for diabetes due to a sore on my leg that would not heal.  The diabetes test came back negative but my thyroid stimulating hormone (TSH) level was extremely high.  Further testing revealed Grave’s disease.  After seeing an endocrinologist I underwent radioactive iodine ablation to “kill” my thyroid gland.  After ten months of unsuccessful thyroid replacement therapy, following radioactive iodine ablation due to Grave’s disease, I was diagnosed with celiac disease in April of 2005.  

Once I had begun Levoxyl, a thyroid replacement hormone, things got worse instead of better.  I had monthly blood work done to check my TSH levels in order to see if I was on the proper dosage of medication.  Over the next ten months, my TSH levels continued to climb, eventually reaching a high of more than 150, (the normal range is from 0.4 to 4.5.) despite being on a very high dosage of Levoyxl and having added another medication for the T3 hormone (Cytomel).

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During this time, it felt as though the life were being sucked right out of me.  I was extremely lethargic, gaining weight at an unnatural rate of 2—4 pounds a week, despite being on the Weight Watchers program, and I fell into a deep depression.  I was prescribed a series of antidepressants, none of which did any good.  Life was borderline unbearable, especially while caring for a toddler.

In April of 2005, after being at his wits’ end as to why I was not absorbing my thyroid hormone, my brilliant endocrinologist thought to test me for celiac disease and the blood test was positive.  He did not recommend doing the biopsy.  I think that was because there was an urgency to get control of my TSH levels.  Within 4 months of going on the gluten-free diet, my TSH levels dropped from the 150’s to 5.52.  

I wish I could say my story ended there and that I have been happily gluten-free ever since, but that is not the case.  Once I began to feel better from having a normal thyroid level, I foolishly began to question my celiac diagnosis.  From what I read at the time, the diagnosis did not make any sense.  I did not have chronic gastrointestinal issues, vitamin and mineral deficiencies, or any of the ‘classic” symptoms of celiac disease.  Neither did I have a known family history of celiac disease.  

The social impact of being gluten-free was devastating for me.  I did not have a supportive family who embraced my diagnosis.  My mother was the biggest influence.  She was confused and overwhelmed by all the changes I needed to make and instead of learning about it with me, she quit including me in family meals.  My mom couldn’t understand why I couldn’t just have a “little” gluten a few times a year, like at Thanksgiving and Christmas.  She thought I was too demanding in questioning her food and its preparation, so she felt it was easier to just have me there when food was not involved.  I felt lonely and guilty for ruining her holidays and my depression worsened from the isolation.

To make matters worse for my uneducated mind, I began to take information I read about the inaccuracy of the AGA blood tests and use it to convince myself that I did not actually have celiac disease.  When I was diagnosed with celiac disease, it was based on only two tests that were ordered by my doctor: Anti-Gliadin IgG and Anti-Gliadin IgA.  My AGA-IgG results fell in the “Equivocal” range at 25.2 EU (positive was greater than 30 EU).  My AGA IgA was positive at 42.7 EU (positive was also greater than 30 EU).

Without consulting my physician, I foolishly went off the diet for the next year and I was included in my family again.  Follow-up visits to my endocrinologist showed that my TSH levels were still in the normal range (despite resuming gluten consumption) and I was not suffering from any GI issues, so I was fairly confident my blood tests fell under the “false positive” category.

When my husband and I decided to have another baby, I was at least aware enough to get the biopsy first.  Knowing about the fertility issues that can accompany untreated CD, I had to know for sure before getting pregnant.  I may have been reckless with my own health, but my children are another story.  When I met with my gastroenterologist for the first time and presented my case, he agreed with my assessment and said I probably didn’t have celiac disease.  The biopsy showed otherwise.  It was positive.  When I questioned him on my lack of symptoms, he said a few things to me.

It was likely that my celiac disease was recently triggered by my pregnancy with Sam, thus the damage to my intestine wasn’t as severe.  The damage to the intestine is patchy at first and the areas of my intestine that were damaged didn’t affect my absorption of iron, vitamin D, etc.  Celiac Disease is progressive, meaning the longer I consume gluten during active celiac disease, the more intestinal damage and symptoms I would incur.

After giving birth to my second son in July of 2007, I cheated on the gluten-free diet again because the hospital could not accommodate my diet.  

Five months after my son was born, my father’s brother died from non-Hodgkin’s lymphoma just 9 days after he was diagnosed.  My pleas for the hospital to test him for celiac disease were ignored as they were trying to save his life.  I knew he wouldn’t make it but I thought it was important to know for our family-tree.  After his death, I learned that my uncle battled severe asthma as a child and approximately 10 years prior to his death he was diagnosed with “tight belt syndrome” after seeing his doctor for gastrointestinal symptoms.  Nothing else was done.

Ironically, while at my uncle’s memorial service in July of 2008, I fell off the diet for the final time.  This time was different though, and about 7 weeks into it, I broke out in a blistering rash all over my torso and scalp.  I also had a bruise 10-inches in diameter on my back as the result of trying to relieve the intense itching by rubbing my back on a doorknob.  I went to my dermatologist for a skin biopsy to confirm my suspicion of dermatitis herpetiformis.

Once the Dr. confirmed it, I asked her if she saw dermatitis herpetiformis often in her practice.  She said she had a few patients with it, but it wasn’t common.  I then asked her if she knew that it is related to celiac disease and she responded with, “I have heard the GF diet can help some patients with DH, but Dapsone is a more effective treatment” (as she handed me a prescription).

I never filled that prescription, especially after my doctor told me that I would need regular liver tests while I was on it.  Knowing that untreated celiacs run the risk of liver diseases like autoimmune hepatitis and biliary cirrhosis, adding a medication that could further jeopardize my liver seemed foolish.  

It turns out that my DH diagnosis was the key to further understanding my lifelong problem with gluten-sensitivity.  While I have not had the classic GI symptoms, I have been dealing with chronic atypical symptoms my entire life.  One of the physicians I saw most frequently, when growing up, was a dermatologist.  I have recently acquired my medical records from that doctor and this is part of what they say:

• 1980 (age 6): Diagnosed and treated for chronic eczema (on my feet—duration of treatment was at least 7 years)
• September 1980 (age 6): Diagnosed and treated for Impetigo* (on my scalp)
• August, 1982 (age 8): Diagnosed and Treated for Impetigo* (on my buttocks)
• In 1997 (age 15): I began to develop a minor itchy rash on my knees.  My allergist chalked it up to my environmental allergy to grass and later the dermatologist said it was related to the humidity.  (I was never tested for dermatitis herpetiformis.)
• 1998 (age 16): I developed a rash consisting of flat scales on my torso, arms and scalp on a trip to Florida.  Upon returning home and seeing my dermatologist, he diagnosed me with psoriasis.  After spending a year in light therapy, I went into spontaneous remission and have not had a recurrence in 20 years.
• From 1999—2008, my DH was sporadic and fairly minor with limited irritation.  Until my final outbreak, I never exhibited a rash that looked anything like the photos I have seen in medical journals.  

Looking back, I can also make several other connections to undiagnosed gluten sensitivity.  I have had many behavioral issues over the years, including extreme emotional highs and lows, anger management issues, depression, and trouble concentrating.  I was diagnosed with Adult ADD by a psychiatrist in 2009 and now take medication for it.

In 2008, after suffering from severe constipation, my then 5 year old was diagnosed with celiac disease via a positive tTG blood test.  His biopsy came back “clean,” and I was originally told to bring him back when other symptoms developed.  I decided to ask his doctor an “off the record” question regarding what he personally would do if this were his son.  He said that he would put him on a gluten-free diet immediately, so that is what I did.

I am now 2 years into a strict gluten-free lifestyle, and have never felt better or been happier in my life.  Not only are my celiac son and I gluten-free, but so is my husband and our other son, neither of whom have been diagnosed with celiac disease.  My husband is so enthusiastic about our diet (he not only feels better, but has lost 20 pounds after going gluten-free), that he has never been tempted to eat gluten.  I no longer feel a sense of loss or deprivation on the diet, and in so many ways, we are all better for it.

*According to the Mayo Clinic, the following are some of the signs and symptoms of Impetigo: 

1. Red sores that quickly rupture, ooze for a few days and then form a yellowish-brown crust
2. Itching
3. Painless, fluid-filled blisters

Dermatitis Herpetiformis is also characterized by an itchy, blistering rash commonly found on the knees, elbows, scalp and buttocks.  

I often wonder if the Impetigo was actually DH?