Undiagnosed but Resolved Fatigue, Abdominal Pain, Bloating
Symptoms: Fatigue, bloating, nausea after eating, abdominal pain, leg cramps, white sandy specs in stool
Things that helped: AZO Yeast, Fluconzole, Total Body Cleanse, IB Gard, Fasting, Baking Soda in Water, Laxatives, Vitamin B12, Magnesium supplements, Zinc supplements, Chewable vitamins, Bayer probiotics, Align (generic) probiotics, fasting, GAPS diet
Things that hurt: Xifaxan, all carbs (rice, beans, breads), Acids,
Sugar sodas, fruit juices
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You are not alone. I'm sorry you're in this group with us, but you are not alone. If you're here, you're with the rest of us: you've gone through the stage of denial of issues (because these symptoms are not good and could be something terrible, like cancer or Hepatitis or HIV--however improbable those nasties are), and you assumed they were a normal part of aging, or stress, or all in your head. Then you came to acceptance of the symptoms, probably because they got so bad they started impacting your life and relationships. But the doctors could find nothing wrong with you. People started suggesting it was your head, stress at your job, bad family life. You got angry. Angry at your loved ones and friends for suggesting that. Really angry at doctors who were more focused in insisting there is nothing wrong with you when the more accurate statement is that they cannot find what is wrong with you. I hope you have avoided and continue to avoid the crevice of despair where you hear Death passing by you. Unfortunately, many of us get to the point of drawing up our funerals before we come to acceptance. Acceptance: acceptance that no one else is going to solve these health issues. And now you are here, with the rest of us. Read our stories, get to know us. We will share what we have learned, and we will get better, together.
It is hard to say when my symptoms began. I was a healthy 26 year old white female when I got pregnant. Possibly they started in the last trimester of pregnancy. Possibly they started after the birth, where I was given at least 3 full rounds of anitbiotics.
I think they started about 6 months later. Perhaps it was the nasty stomach bug. Perhaps it was the repeated rounds of antiobiotics my son and I were given. At either rate, my son and I kept developing thrush and I became convinced I was pregnant. I was bloated, nauseated, and I swore I could feel a baby moving in there. The pregnancy tests all came back negative, and the doctor diagnosed a UTI (never had one before). At the time, I assumed he was right. My symptoms waned with the antibiotic.
About six months after that, the bloating was terrible. I hadn't complained about the bloating before, because they said it could take a year to get the baby weight off. Well, the weight had really been off for 6 months, but after eating, people would insist I was pregnant again. I was not. And the fatigue. Again, I blamed this on the baby. We'd had a rough winter, but he was really only getting up once a night. I was still soooo tired. I blamed it on our mattress, which was still fairly new. I made my husband buy a new one. It didn't really help.
Two months after that, the pain started. Suddenly. Excruciatingly. In my lower right side. I couldn't push open a door without being in pain. X-rays were normal. Ultrasound was normal. I thought it might be a UTI, but cranberry juice and other acids made it worse. Baking soda in water took away the pain. Primary care doctor prescribed a PPI (Protonix) for high stomach acid, but that made me certifiably CRAZY. I started talking to myself. It helped with the pain but not the bloating or fatigue. I stopped the Protonix. I started avoiding bread because I noticed it aggravated my symptoms. I got tested for wheat allergy. It was negative.
Four months after that, the bloating was getting quite bad again, even with avoiding wheat. I tried the Activia challenge and started a daily probiotic (the generic version of Align offered by Sam's Club). It helped some.
Two months after that, I fasted for a day for religious purposes. I felt amazing. A-M-A-Z-I-N-G. This is when I first took my condition seriously. I made an appointment with "the best GI in the city"--I had to wait for 1 month. I started on the GAPS diet, which helped tremendously.
The GI didn't believe there was anything wrong with me. He did some blood tests for organ function (liver, kidney?? and Celiac's) and had me do barium x-rays with follow through. They indicated some inflammation in the small intestine. He suggested Protonix. I refused based on previous expereince. He scheduled me for an upper endoscopy (again, one month out). That showed--possibly--a slightly red stomach, but I was negative for H. pylori. I got worse and found that I had to really minimize all foods in order to function: I was eating about 1 small meal a day and drinking Ensure. I did a lactulose breath test which was possibly positive. I took Xifaxan for 7 days. Day 1 was great. I got worse each day and ended up in the ER on day 7 from eating 4
oz plain yogurt (which, 5 months ago, was my friend). The CT scan was negative. ER diagnoses me with IBS, but the foods they recommend (rice, toast, applesauce, chicken broth) all really bother my stomach. I stop eating entirely for several days. I have a colonoscopy. It shows inflammation in the small intestine but a normal colon. The biopsy for Crohn's does not come back positive. I am convinced I see a worm in my stool. OVA & paraasites test comes back negative. HIDA scan is normal (possibly quick to show gallbladder, if anything). Doctor does blood test for Crohn's. It comes back negative (and so does 2nd blood test), so he calls my condition IBS. I insist it is not (I've not had diarrhea or constipation and I maintain elevated WBC and fever). He then calls it IBD/Crohn's (yes, even through 2 blood tests have come back negative). He orders Asacol for me. While waiting on the blood tests, I've seen another GI who said I could try IB Gard (for IBS--it's peppermint oil). That seems to help, so the main GI prescribes Hyoscyamine (a prescription anti-spasmodic). I also see my primary care who agrees the diagnosis is suspicious. She wants me to take Zantac (150mg 2/day) since the the Protonix did not work out. It gives me leg cramps/discomfort. I stop it after ~3 weeks--it didn't affect my symptoms on starting or stopping. She also tests for E.coli, Shigella, Salmonella, WBC in stool, OVA & parasites--all negative.
During this time, I get a sinus infection. I take amoxicillin. I get better for the first 8 days on it. The last 2 I start getting worse again. I go to England for work. They sell Diflucan pills OTC for thrush. I take one. It is wonderful. I buy 2 more. I take one when I get home. Nervous about running out, I try AZO yeast.
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Some good has come of this. I have much more empathy for the folks who are gluten-free. It really is terrible going to lunch with coworkers or to dinner with friends or to niece's birthday party and having limited or no menu choices. I get that now. Yes, you can always eat a plain salad. But by gosh, sometimes you just want FOOD. By far, the best thing that came from this was my salvation. Ok, so I professed faith and I believed in God with my head, and possibly with my heart. But I honestly still believed that I was going to hell. That I was too far gone to go to heaven. At my lowest times, when I felt like I was practically dead, when I could eat no food and doctors didn't care, I prayed. No, I meditated. No, not that either. I just drifted with God. I was with Him, in Him, and He in me. And that is how I kept breathing. I did not have the energy, the clarity, to pray. I just was. I was with Him. At some point, when I started to go on the upswing, I realized that God was with me then. He was closer than He ever was before. If He is going to walk with me through the Vallley of the Shadow of Death, surely he will not abandon me at Death. And so I was saved, born again. Not in the Pentecostal, southern Baptist version, but in the quiet, joyous elation of my own heart. My friends, if nothing else comes of this, that has made it worth it. So find your good in this. Because you do have food. You may be suffering and cannot eat it, but how much worse would it be if you had no food, if your children had no food. And lest you think this sound superior, I write this while I am still sick, still suffering. I write this today in the hopes that someday I will be well and can post my story.
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I will say, the AZO Yeast appears to be helping. I stopped the Asacol yesterday. I have been off the anti-spasmodic for about 1 week now and seem to be continuing to get better each day. I have ordered some Bacillus Coagulans and a Candida cleanse online, and we will see if that alone helps. I doubt the other ingredients in AZO Yeast are effective. I have been eating normal for about 1 week now: pizza, hamburgers with buns, french fries, sodas, and I still seem to be getting better each day.
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For those of you interested in trying the GAPS diet, know that my symptoms improved dramatically while on the diet but resumed quite quickly within leaving it (hours if on it for days, days if on it for weeks). Still, my suggestions:
Week 1 Menu
Drinks: water
Breakfast: Eggs, plain or in omelet with bell peppers, garlic, jalapenos, spinach
Lunch: Endive and romaine salad with radishes with Tahini dressing
Dinner: Lean ground beef with garlic, green bell peppers in blanched cabbage roll / Tuna with fresh horseradish, garlic, ginger / shrimp with coconut, red pepper, lime
Crock-pot rotisserrie chicken with tumeric, garlic, onions
Snacks: Pumpkin seeds in shell, flax seeds, almonds
Week 2 menu
Breakfast: Almond butter on brown rice cake
Lunch: previous salad with tahini dressing and tumeric/garlic/onion chicken
Dinner:
Drinks: Water, Bigelow Lemon Ginger Probiotic tea w/ drop of tea tree oil, Traditional Medicines EveryDay Detox tea, some coffee (a cheat, but black)
Snacks: Pumpkin seeds in shell, flax seeds, almonds
Tahini Dressing Recipe:
Tahini (ground sesame seeds - Mediterranean/Arabic foods)
plain yogurt (about 50%, say, 1/2 cup)
garlic to taste: 1-3 cloves
lemon juice ~1 Tablespoon
parsley ~1 Tablespoon
water to thin, ~1 Tablespoon
Dressing is edible but salad is much improved with sunflower seeds on top