My being diagnosed with celiac disease was my miracle. I had been to many doctors and when I finally found Dr. Karnam and he listened; it was miraculous! When I got answers to my health problems, that’s when the miracle was truly realized.
I have been small all of my life. Everyone kept saying we just had small relatives. My great grandmother was only 4’11”. Still, I didn’t buy it. I often said I was supposed to be taller.
My teeth have always had problems. My enamel problems were always chalked up to poor nutritional advice my mother had when she was pregnant with me. It didn’t matter how well I brushed my teeth, I always had at least one cavity every time we went to the dentist (Often, I had 3 or 4.) It was so frustrating, especially since I knew my brother wasn’t brushing his teeth and I was, at least twice a day and he never had any cavities! It didn’t seem to matter what I did; I would still get cavities.
I remember having brain fog as a kid. I remember deciding I wasn’t going to keep eating my favorite cereal, with my dad, Wheat Hearts, because it always made me feel yucky and gassy.
I was often embarrassed, by always having gas. I wondered if everyone was as gassy as me. I mentioned something to my mom once and she told me I took after my grandpa who was very gassy. (Celiac has been found on his side of the family. She was more right than she knew!)
I remember a time when I took Peptobismal everyday because I had mystery diarrhea. (There seemed to be no reason for it.) My mom would tell me to wash my hands better. (I had more symptoms of celiac than I thought and at a young age.) She also said it wasn’t real diarrhea because it only happened once or twice a day.
As a teenager, I was extremely pale and often tired. We didn’t always have health insurance and only went to the doctor when we really needed to. So, my symptoms were never looked at. I was often asked by people if I needed to sit down. They would tell me I looked like I was going to pass out. My mom would laugh it off and tell them that’s just my normal color. Now, I am sure I was anemic.
Then, at 16 years old, I started breaking out in hives. I had hives that just wouldn’t go away! They were miserable and it was hard taking Benadryl, to get through the day! (Not to mention all of the other pressures of being 16!) The doctor said it was a combination of being stressed and something I ate.
We tried food journals and for a while thought I was allergic to banana’s, but that only lasted for a short while. The hives would stop for a week or so, here or there and then start up again. Soon, I hadn’t had banana’s in months and still was breaking out in hives. (The doctor, said it is hard to tell what you are allergic to because it can stay in your system for months and continue to cause reactions. I didn’t eat banana’s again for at least a year or longer.)
A partial misdiagnosis
Since the doctor had said stress was a factor, it became a focus. When I would complain about the hives, my parents would tell me I needed to calm down and stop being so stressed. I tried to explain to them that I wasn’t stressed and sometimes when I’m really stressed, I don’t have hives. They didn’t believe me. In fact, when I would say I wasn’t stressed they would point to the hives and tell me my body was saying otherwise!
It felt like everything started to be chalked up to my mental state and that I couldn’t handle stress. I was often told things like: “If you would just learn to relax…”, “Stop taking everything so seriously”, “You just need to calm down. . .” etc. Then, one day, the hives just stopped and didn’t come again, for a whole year! Oh what bliss! (I felt more stress because of graduation, college decisions, friends, my parents building a house, etc than I had the year before and yet no hives!) It didn’t make any sense. Nothing had changed. I was eating the same foods, except bananas. We couldn’t find anything else that might be an issue.
Then, I went to college. A few months in and the hives started again. It was miserable! I never knew when they were going to come. Sometimes it would be for a day but often it was for weeks at a time. I lived on Benadryl to keep the itching down. A PMS medication seemed to help some.
I was on the speech team and my coach told me to look into gluten. He told me, that perhaps, my body couldn’t break down the protein in wheat. I went to my doctor with this information. I wasn’t having any bowel symptoms to speak of and so he told me I couldn’t have celiac and to put it out of my mind.
More food journals were done and an experiment with whole wheat. I had hives down my throat after several days of whole wheat! We decided I could have “white wheat” (bleached wheat) but not whole wheat. I really didn’t know anything about allergies. There wasn’t an internet to help you find answers. I avoided whole wheat like the plague and it helped, a lot, but not totally. (Some people, mostly family, treated me like a little kid who says they are allergic when the truth is they just don’t like something.)
When I got married, I was terrified that I would break out in hives and have a swollen eye lid or ½ a lip! I tried to not be stressed, which was impossible! (I seriously have the worst in-laws, but that is another story.) Thankfully, no hives on my wedding day!
During each of my pregnancies I was hive free. That was the best part of my very difficult pregnancies which included 9 months of morning sickness. I was anemic and always on the verge of needing a transfusion. I had pre-term labor and was on bed rest for 2 of my pregnancies. The other 2, I was to take it easy and one of those babies came a month early. I was miserable when I was pregnant. I really hated pregnancy! (Love my kids, but hated each one of those 9 months.)
My last pregnancy
With my last one, I felt like I was slowly dying! I didn’t know if I was going to make it through! I was so weak, tired and sick. I was put on bed rest. She came only 2 weeks early. It was a quick delivery.
However, shortly after I delivered her, 2 nurses decided they were going to walk me to the bathroom. My epidural had just taken 30 minutes prior to this. I told them I couldn’t walk. They told me to lock my knees and they would help me. I said, I can’t lock what I can’t feel. Just before standing me up they said, “If you start to go down, we have to let you go down”. My husband said it looked like they helped me up and then threw me to the ground. I was stunned! I just gave birth and then was dropped on the floor!
I was then taken to a recovery room where I hemorrhaged and the doctor had to be called back to the hospital. For days afterward, I had so much pain and it hurt to walk. There was a severe pain all throughout my abdomen. When I talked to my doctor he blew it off and said I had a rough time and just needed more time to heal; than I had with my other pregnancies.
Before my baby was 3 weeks old I had to have a D&C. I had a serious infection. The doctor said the infection had eaten away all of the uterine lining and that it was a good thing I was done having kids because I would only have miscarriages from here on out. The abdominal pain subsided after the surgery. I still had a pain in my side that no one could explain.
Trying to get answers
Every time I went to a doctor about it, they would ask about my last pregnancy and delivery. When they heard what I went through, they would tell me I needed more time to heal. I tried to exercise and get into shape. No more babies meant I could now be skinny! I could exercise and push myself through to get into a routine. It would last for 2 weeks, each time I tried, but after 2 weeks I had a hard time walking. The pain in my side would become excruciating! I had to send my husband to do the grocery shopping. If I went to the store it was for the bare minimum. I couldn’t function! I got no help from doctors! Then I hurt myself and ended up in a boot for 4 months. When I started trying to exercise again, nothing had changed, the pain was still there. Exercise 2 weeks, unable to walk for 2 months!
Meanwhile, once my husband and I got good health insurance (a couple of years after we were married), I started trying to find answers to my hives. I went to doctors, allergists, and anyone else who might be able to help. No one gave me satisfactory answers. Mostly, I was told to keep food journals and avoid food that gave me problems. I avoided all wheat, or so I thought. Foods weren’t labeled as well and I didn’t know to also avoid barley, rye and oats. Which is why there never seemed to be rhyme or reason to my outbreaks.
The last allergist I saw told me I have Uticaria, chronic hives, and that 90% of people with hives like I have, never find out why. The best thing I could do, is learn to live with them. I had been living with them and it was hard. This is one of the most depressing things I had ever been told in my life! I had already been living with this for 17-18 years! It was like being given a prison sentence with no hope for parole. I hated my skin and I hated the itching and I hated wanting to rip or burn it all off! I was miserable and depressed!
It’s in the family
My cousin was diagnosed with celiac disease. His mom ran across something that mentioned, some people experience hives with celiac disease. She suggested I be checked for it. Soon, I had another cousin being checked and my sister. I went to my doctor with this information and practically begged him to do the blood work. He talked me out of it. Told me it was unnecessary. I didn’t have bowel issues, I had nothing to worry about and hives weren’t a symptom. He said with the family members that have it or are suspected of having it, I hit the jackpot. They got it and I wouldn’t because it doesn’t run strongly in families. (My sister never finished being tested and the other cousin was inconclusive. However, many other family members have been diagnosed since then.)
From the second I walked out his door, I kicked myself, for letting him talk me out of being tested. (I’m not a pushy person and it’s hard for me to ask for what I want and need.)
Over the next year, I underwent $10,000 worth of tests to find out what was wrong with me.
This is where my last pregnancy and celiac collide.
I started to have the worst cramps I have ever had. (My primary care doctor put me on 800 mg Ibuprofen.) The cramps wouldn’t go away and were there all day and night. These were not menstrual cramps, but I was tested for all female cancers first. All negative. My gyno came up with a plan. I had sludge in my gall bladder but the surgeon wouldn’t remove it because he felt that it would be good for another 5-10 years. He also said that all of my health problems would be fixed if I were to go on anti-depressants and take up swimming! I yelled at him, I was so mad!!! I was put on IBS medication.
The cramping stopped, but I suddenly had all the other symptoms of IBS!I called the doctor’s office and asked if this was normal?! Shouldn’t I have no symptoms, not more?! They referred me to Dr Karnam, a gastro-enterologist. I reluctantly told him about my hives. No one else had listened and hives aren’t part of the GI tract. I mentioned my cousin with celiac and that family members were being checked. He found this interesting. He even found my hives interesting! He decided to skip the blood work and get me right in for a biopsy. I hardly had time to think!
He did a colonoscopy while he was at it. After the scope and biopsy the nurse looked worried. She asked me if I knew of any reason why my stomach would be so red! I told her the only thing I could think of was the 800 mg Ibuprofen that I took sometimes twice a day 3 or more times a week. (Not nearly as often as my doctor had told me I could take it. I don’t like taking medicine and so I tried to not take it very often.) My stomach was bright, bright red! Ugh! Just what I need, another problem! A few days later, I was diagnosed with celiac disease. I was so happy to finally have an answer!
My health was still on a downward spiral, but for a while, I felt amazingly well. I don’t know if I ever felt this well before! That lasted for only a month or two. I was diagnosed with Gilbert’s disease., a liver disease. (Not related to celiac) I was also diagnosed with cardiogenic syncope. (I think this was a misdiagnosis. I believe I had adrenal fatigue and sometimes still suffer from adrenal fatigue. Symptoms are similar. Absolutely, related to having undiagnosed celiac disease for so many years!) I had weird things going on with my heart. Unexplained swelling; I couldn’t wear my wedding ring. (It was often loose, until now.) I had heart tests, stress tests, tested for cancer almost every month. A weird rash appeared across my rib cage. Everything I read said I should be doing and feeling awesome and have no more problems, but issues seemed to be piling up, again.
I Felt Like I Was Slowly Dying
Once more, I felt like I was dying. It broke my heart when my oldest daughter asked if I would lie on the couch instead of my bed because she missed me. Our dog wouldn’t leave my side. On good days, I would work in the garden, because it was more normal. I could cry without my kids realizing. My doctor thought I had amlyoidosis. A horrible disease. Most people die within the first year of diagnosis and it causes you to go into organ failure. I needed to have my liver biopsied.
It was decided to take out my gall bladder (I saw Dr Oz talking about gall bladder disease. He was showing funny looking white stones. Mine didn’t look like that. Mine looked like lots of little black watermelon seeds. Then he showed a picture that looked like mine had. He said this is the more dangerous gall bladder disease. These little stones can travel into the pancreatic ducts and become lodged, which can cause pancreatitis.) Finally, validation! No anti-depressants or swimming would fix this, celiac, adrenal fatigue or anything else I had recently been diagnosed with! When they took out my gall bladder, they biopsied my liver and my rash. I did not have amlyoidosis, but I do have some fatty liver disease. (celiac related)
I felt so much better once my gall bladder was out and all of the weird swelling and heart issues went away with it! (Many people with celiac have gall bladder issues.) The rash was another story. The pathology report wasn’t good! I needed a really good dermatologist! The report was that I had thickening of the keratin in the skin. They thought I had that disease, where your skin hardens and the pores are blocked off and you die a slow and painful death. I found a really good dermatologist. He looked at my report, looked at my skin and then shook my hand. He said, “Congratulations, you don’t have what the biopsy report thought you have.” Then he told me I actually have reticulated pappilomatosis. He gave me some medication and it went away! It shows up every few years. (I suspect it is related to my celiac that was active for so long! I haven’t heard of anyone else having this but I do believe I have it because my skin has weaknesses. It’s what is attacked when something is wrong in my body.)
It was hard to go gluten free! It was hard to find my “new normal”. That being said, it has been worth it! I haven’t had a single hive since going gluten free! I have learned so much and tried many things that I wouldn’t have; without going through all of this. It has been a hard journey and I’m so glad to finally be on the other side of it!
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