As I’ve said before, tummy issues aren’t a “lovely” topic of discussion, but when you are new to Celiac Disease and Gluten Intolerance, you have questions – LOTS of questions! Because our family has been dealing with this issue for more than two decades, we have gained valuable insight regarding the disease, it’s symptoms, and how to manage it on a daily basis, and we hope to answer some of your questions by telling our story and sharing what we have learned along the way.
Rose has had tummy troubles since she was born, but we didn’t have a “name” for it way back then. Our journey to find a proper diagnosis was complicated, costly, and FRUSTRATING because, until recently, the medical community in our area was either unfamiliar with Celiac Disease or hesitant to diagnose it … I’m not sure why, but that’s a
rant discussion for another day!
Perhaps your journey to this diagnosis has been has been long and bewildering like ours. That seems to be the common story among the people I meet who have been diagnosed with Celiac Disease. I think it is because the symptoms sound generally vague and ambiguous when they are described, and most doctors dismiss them as something akin to the occasional upset stomach or constipation. That was certainly our experience as we made countless trips to the pediatrician, the allergist, two different pediatric GI specialists at Children’s Hospital, and eventually an adult GI specialist.
Rose was always complaining of her side hurting, or her upper abdomen hurting, or her stomach feeling like she had swallowed nails and they had scratched the inside of her tummy raw (that’s how she described it when she was young). Often, she had a distended, swollen belly, and she had a lot of pain in the area of the gallbladder, which was eventually removed – but to our surprise and frustration, the pain continued in the same area even after she healed from the surgery! (Eventually, I hope to write a post about Why Celiac Disease Sometimes Causes Pain In The Gallbladder Region)
Generally speaking, her guts were hurting and uncomfortable on a regular basis (especially when we traveled), but doctor after doctor told us that they couldn’t find anything wrong.
Her CBC blood panels always looked “fine.”
Her liver enzymes looked “fine.”
Her endoscopy looked “fine.”
Her colonoscopy looked “fine.”
Her gallbladder function test looked “fine.”
The confusing part was that she didn’t feel “fine.”
Her uncomfortable tummy kept us intensely focused on digestive issues, but other symptoms of Celiac Disease were there as well – we just weren’t aware that they were related. One advanced symptom of Celiac Disease even mimics a heart attack!
Skin And Hair
- Acne – Rose developed it shortly after birth. It cleared up during childhood and then became difficult to manage during her teen years and has continued into her 20’s.
- Sores in the scalp – especially along the hairline at the back of the neck. (See Why You Should Check For Gluten In Your Shampoo And Conditioner)
- Hair loss – sometimes by the handful!
- Dry Flaky Skin – Rose only had it across the bridge of her nose, but this can show up anywhere on the body. (See Why You Should Check For Gluten In Your Makeup And Lotion)
- Chicken Skin (a.k.a Keratosis Pilaris1) – sandpaper-like bumps on the back of the upper arm. The bumps generally don’t hurt or itch.2
- Skin Rash (a.k.a. Dermatitis Herpetiformis3) – bumps and blisters that can occur on the elbows, knees, scalp, back, and buttocks.4 Often misdiagnosed as herpes, eczema, contact dermatitis, hives, or psoriasis.
- Brittle, rippled, or pitted fingernails. (See Why Celiac Disease Causes Brittle, Rippled, or Pitted Fingernails).
Vitality Of Life
- Brain fog, which isn’t always present, but at times can be really bad.
- Periods of extreme fatigue which are unrelated to physical activity.
- Persistent insomnia and restless sleep. I would find Rose sleepwalking several times each night until she reached her teens!
- Persistent, low-grade temp.
- Stiff, aching, and sometimes swollen joints especially in the fingers, wrists, ankles, and hips. Rose was tested for rheumatoid arthritis at age 5 and again at age 20 and 24 because the symptoms were so prevalent. Every test was negative.
- Vitamin D deficiency with its companion – Depression! Thankfully, the doctor caught this with one of Rose’s blood panels and put her on prescription strength Vitamin D. Otherwise, we would have thought this was just “nerves” as she began college, or perhaps an emotional issue of some sort.
- Damaged Tooth Enamel.5 Rose never had this symptom, but her dad (Papa Rose) did. After we graduated from college and got professional jobs, our first investment was caps for all his front teeth.
Because we know that Celiac Disease Tends To Cluster in Families6, we now understand why Papa Rose and most of his family suffer from persistent “indigestion.” Recently, one of his brothers was diagnosed with Celiac Disease as well, so there is no doubt in my mind that Papa Rose’s indigestion is also gluten related. In fact, just four weeks after eliminating gluten from his diet, the pain he had been feeling in the area of his gallbladder had disappeared, he quit having indigestion, his distended stomach had flattened, and he is now able to sleep lying flat and even on his stomach – something he hasn’t been able to do for years!
An Advanced Symptom
Rose had lived with many of the typical symptoms of Celiac Disease since she was very young, but when she moved into college housing, her health took a scary turn! I share more about that experience in The Advanced Celiac Symptom That Mimics A Heart Attack.
- General Pain in the Abdomen
- Distended, Swollen Belly
- Specific Pain in the Gallbladder Region
- Persistent Indigestion or Acid Reflux
- Raw or Tender Feeling Inside the Stomach
- Constipation or Diarrhea – this may sound like a conflict, but the reaction changes as the disease worsens and inflammation levels rise.
- Frequent Vomiting
- Urgent Bouts of Diarrhea (often right after eating)
- Frequent Use of Over-The-Counter Stomach Medicine
While IBS is not a “symptom” of Celiac Disease, often the two travel together.
Make A List And Take It With You To Your Physician
If you are struggling with digestive issues, review this article and make a note of all the symptoms you are experiencing that might be related to Celiac Disease. Don’t forget to add the names of any relatives who also suffer from digestive issues and could have passed this “inheritance” down to you. It might be worthwhile to have a candid conversation with those relatives. Chances are, they will be willing to discuss this issue with you. They may even learn something they don’t know about their own health because of your research!
Also, ask around to see if anyone can refer you to a doctor who treats other patients with Celiac Disease. We had a long and frustrating journey before we finally found a doctor who was willing to engage in a real conversation about the symptoms and was up to date with their testing methods and treatment plans for this disease.
1 Does Gluten Cause Keratosis Pilaris?
2 Keratosis Pilaris, Mayo Clinic
3 Dermatitis Herpetiformis, Celiac Disease Foundation
4 Dermatitis Herpetiformis and Gluten Intolerance
5 Dental Enamel Defects and Celiac Disease
6 Celiac Disease Tends To Cluster in Families