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Crohn's And Celiac?

Chiron

By Chiron
in Related Issues & Disorders

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Chiron Apprentice
Chiron
Posted

I have been poking around and have seen a couple of other threads on Crohn's and Celiac so I know there are several of you (us?) out there. In 2005 I was diagnosed with Crohn's after an abscessed mass in my terminal ilium was surgically removed, the biopsy showed the Crohn's pattern of inflammation. In 2008 I was diagnosed with Celiac (biopsy confirmed). However, when I was diagnosed with Celiac my GI doc said he thought that I had simply been misdiagnosed with Crohn's and I only had Celiac all along. After 4+ years of Gluten Free living I am still having a lot of problems- diarrhea on a weekly basis, body aches, fatigue, not able to digest foods (beans, nuts, lettuce, corn etc.), still deficient in Iron, Vitamin D, and B12. I am wondering more and more if my doc is wrong and I am actually dealing with both conditions. I had an endoscopy and colonoscopy in January following an obstructed bowel. Report said no celiac damage or signs of Crohn's inflammation, or obvious reason why things stopped working.

Any advice out there? Part of me says I just need to double down and make sure I am not getting inadvertent gluten- but the biopsy showed no signs of villi damage (most recent Celiac panel also looked good). I am already very careful, so I am not sure what this would mean other than restricting myself to only eating inside my home with no processed foods (that aren't certified). Or do I follow the Crohn's path with a second opinion? I have a GI appt coming up in August but I am pretty certain he would discourage the Crohn's idea. I saw a post that said its pretty hard to mistake Crohn's and Celiac b/c they affect different parts of the bowel and in different ways- but wouldn't a GI doc know this?

I am so tired of being sick all the time no matter how hard I try to follow the gluten-free diet. When I get sick seems to have no rhyme or reason- I am sick now and haven't eaten anything I didn't cook myself in the past 2 weeks.

I'd really appreciate any advice from folks who have had to tease out these two diagnosis.

Thanks!

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Newbee Contributor
Newbee
Posted

Have you thought about trying the specific carbohydrate diet? It is recommended for celiac, crohns, and ulcerative colitis. It is very restrictive but I wonder if it might help. There is lots of info on this board and the intranet on it if you are interested. I'm doing it now and it seems to be helping with problems being gluten free is not clearing up.

GlutenFree-MLDub Rookie
GlutenFree-MLDub
Posted

I don't have Crohn's, but have a couple friends who do. They tend to eat gluten free when they're having flare-ups, but said that honestly, when they're having a flare-up, it doesn't matter what they eat, it doesn't get better. And when they're NOT having a flare-up, it ALSO doesn't matter what they eat. Seems frustrating. One of them used to take the medication, the other one currently does. The meds can be dangerous though as I'm sure you know.

Have you tried taking glutamine and probiotics regularly? They could help you heal and stay healthy. My doc has me doing both right now since I've just finally gone fully gluten free. I would think it would help with healing from Crohn's as well.

If you're being gluten free, I would think you may have another sensitivity/intolerance. Consider: soy, other grains/corn, dairy, eggs. Do your symptoms correlate to ingesting any of these or other foods?

I hope you feel better soon!

GFinDC Veteran
GFinDC
Posted

Hi Chiron,

Bowel obstruction sounds like Crohn's to me, but I am no doctor. If you check the signature lines of people here, there are many other foods besides gluten that can cause us problems. Soy, corn, nightshades, eggs, dairy, all are possible issues plus any other food for that matter. The usual thing is to do an elimination diet and see if you can find the culprits. There is often more than one a bad food to identify. So the way to do it is start with a small number of foods (5) and add slowly one a week. Starting with a couple weeks of just the 5 foods to get things settled. Sweet potatoes, lamb, oranges, green beans and peas might work. Try to pick things you don't usually eat though. Not foods that you know make you sick, but foods that are unusual for you.

My brother had Crohn's and celiac. One of his favorite treats was peanut butter fudge.

Chiron Apprentice
Chiron
Posted
  • Author

Thanks for the advice so far. I think I will try a modified elimination diet and see if there is anything else food related. I have heard that many people with Celiac have other intolerances. To be honest I am not looking forward to it- my diet is very carb/grain heavy. I eat a lot of gluten-free breads, rice, gluten-free pasta, and potatoes. I am one of those folks who was raised on processed foods and not eating many veggies and have never acquired the taste or learned how to cook them well. I am not confident I can cut back to 3-5 foods- but I will at least try to cut the major allergens and grains.

I am worried that I won't get enough nutrients though. I am very active and need calories. I also battled an eating disorder when I was younger- so restriction is touchy for me.

Newbee Contributor
Newbee
Posted

I don't do soy or any grains (these are restricted on the specific carbohydrate diet). I do very little dairy (only hard cheeses currently). The diet seems to be helping me. It is just hard to stay on due to the little variety that I am getting currently. I have tried probiotics and glutamine and neither seemed to help me unfortunately.

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    • cristiana
      Feel like I’m starting over

      By cristiana · Posted

      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
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      By knitty kitty · Posted

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    • Wheatwacked
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      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
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      By NanceK · Posted

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
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      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
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