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Antibodies Still High

Janerie

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Janerie Newbie
Janerie
Posted

Hi all -

This is my first forum post, though I've been reading almost every day since being diagnosed via biopsy 6 months ago. I can't tell you how invaluable your insights have been!

At any rate, my question is this: I just recently had my 6-month follow-up. Since going gluten-free, I've felt SO much better . . . but my antibody levels still came back really high. In fact, they're almost as high as they were before I was scoped.

Has this happened to anyone else? Still being new to this, I'm sure I'm tripping up on some ingredients and getting accidentally glutened, but I'm really surprised by those results, especially considering how much better I feel. Could it be possible this is a cosmetic/shampoo/personal product issue? Man, what pain . . .

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starrytrekchic Apprentice
starrytrekchic
Posted

It could be.

The first thing to check is cross-contamination in factory (assuming you already know all the labeling laws). I'd go through everything that's processed (and even things like trail mix) and check online or call the company to make sure they're gluten free and made on gluten-free lines.

Also check your vitamins, prescriptions, and herbal supplements. Nothing is automatically safe--meats can have wheat added to them, drinks like tea and instant coffee occasionally have gluten, etc. You really have to check everything.

You also might want to chuck gluten-free stuff that falls under the 20 ppm but is made on shared lines. The 20 ppm might be too high for you.

You might also react to distilled alcohols that were made from grains (like wheat vodka.) This isn't common, but it does happen.

Recheck everything you're eating outside the house, your cross contamination precautions inside the house, and then, yes, things like toiletries and pet food.

Good luck!

teresasupermom Rookie
teresasupermom
Posted

We are going through similar problems with my dd. Her antibody levels have progressively gone up her last 3 checks in spite of us being stricter and stricter with things. We at first were only having her meals gluten free, and then the whole house has gone gluten free. I would start looking at that. For us I believe her primary problems have been cross contamination. You may be missing things there. Do you go out to eat at all? Are there other people around you that you live with that still eat gluten?

dilettantesteph Collaborator
dilettantesteph
Posted

You may be one who reacts to very low levels of gluten, even in gluten free foods, but without overt symptoms. I am symptomatic with a lot of them. You may need a whole foods diet like I do.

Gfreeatx Apprentice
Gfreeatx
Posted

I just had the same thing happen to me, my blood test still showed elevated levels despite the fact that I have been very careful with all the foods I have been eating and have been feeling better too. When I got the results I rechecked everything I was eating and also my toiletries. I figured out that my hand sanitizer, hand lotion, face moisturizer and foundation all had wheat or barley in them after calling the manufacturers. I was shocked since I did check the ingredients on each of them and didn't see anything that would have made me think that they contained gluten. Lesson learned, call the manufacturers to double check. Here I thought I was doing a great job and I was covering my face and hands with gluten. :)

Tigercat17 Enthusiast
Tigercat17
Posted

I totally agree with dilettantesteph. I've had high levels of antibodies every time I was tested for blood work since I've been diagnosed and I've been gluten free for 18 months. I was feeling a lot better after 5 months on the gluten free diet, but still not 100%. My reactions are so subtle I didn't even notice it. I know it's so frustrating. I did finally figure it out. I was getting cross contamination from supposedly "gluten free" vitamins and some gluten-free processed foods. I even have trouble with Glutino products which are supposed to be one of the better companies. This is the only gluten-free processed food company I buy from now, but I still can't eat it everyday. It seems like every once it a while I get a bad box of cereal.

What helped me is I just went completely on a whole food diet -all fresh meats, veggies & fruit. I didn't feel any better so I knew it was the vitamins. So I changed the vitamins and then I all my subtle reactions went away and I started to feel 100%. Then once a week I added one of the gluten-free processed foods to see if I reacted. I also keep a food journal and documented how I was feeling. I found out that I always react the next day when it comes to gluten. I also had to stop eating most of the gluten free cereal I was eating. :( But the food journal really helped me figure it out. When I started to see the pattern from my journal, I knew I must one of the sensitive ones & I just couldn't eat a lot of gluten free processed foods. It's a bummer, but we adjust. And these processed foods really aren't good for you anyway, so it's just not worth it.

I had my most recent test in Dec. It was 29 - which is the lowest it has ever been. My GI doctor wants me to have it tested again soon. He said it should be down to normal by now. He thought I was getting gluten in my diet still for the last year. I really had no idea. It was getting so frustrated, because I'm so super careful. I have a gluten free home (everyone eats gluten-free), I wasn't eating out at all, all my beauty products are as gluten free as far as the companies know, so I know it had to be food that I was buying for my home.

I hope this helps! I'll have to let you know what my blood work results are next time. I'm really hoping they are down to normal. :)

Janerie Newbie
Janerie
Posted
  • Author

Wow - so much to think about, but thanks for all the useful information! I really have tried to avoid most processed food since going gluten-free, but I certainly haven't eliminated 100% of them. And my household isn't gluten-free; my partner's good about eating gluten-free most of the time, but he still keeps his own bread, cereal, etc. in the house. We just finally started using separate butter, but I bet I've been getting CC'd from simple things like that. And we do eat out a lot. I know right away when I've been glutened at a high level - my borborygmi (sp?) kicks in within 10 minutes - but it makes a lot of sense that I could be reacting to even small amounts of CC. And while I always ask for the gluten-free menu, and/or ask wait staff to check with the kitchen before I order, I guess I really can't trust the options or the answers.

BTW, my level when I was first tested was around 120. Six months after going gluten-free, it's 90.

But, I guess practice makes perfect, right? :-)

Thanks again for all the suggestions . . . I still have a lot of work to do!

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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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    • Wheatwacked
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      By Wheatwacked · Posted

      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
      My only proof

      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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