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3 Months Of Gluten Free

secretsauce

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secretsauce Newbie
secretsauce
Posted

Last summer I went to a gastro doc and showed him my blood test and mentioned that another dr looked at my blood work and said it looks like someone who doesnt eat enough. I eat plenty although I'm only 160 lbs 6'0 (male). The gastro doc suggested he do an EGD to test for celiac but because of my deductible and never doing anything other than paying a copay to see a dr, I'd have to pay about $1400. Didnt feel like doing that right then. I did the blood test and it was negative for celiac.

So three months ago my wife and I started a gluten free diet. The only change in how I feel has been much less acid reflux and maybe less dizzyness although that usually happens in higher temperatures than we have right now. How long should I have to wait after going gluten free to feel better?

A quick summary of my health issues, started about 10 years ago and has steadily worsened: Dry eyes, dry skin (dry everything pretty much), joint pain and tendonitis (knee, shoulder, lower back, wrist), fatigue. At first I thought celiac sounded like something that could cause this... perhaps not being able to absorb nutrients over a long period of time has caused these problems. But I dont have the stomach pain and other symptoms often associated with celiac.

Is it possible I do have celiac? Would you recommend the biopsy?

thanks in advance.

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nmlove Contributor
nmlove
Posted

Is it possible to redo the blood work you had done previously? The way you said it, made it seem like they checked vitamin/mineral levels? If so, that may be a possibility to see if the gluten-free diet is helping you absorb better. As far as time it takes to heal, I'm not sure in your case. Other, experienced members can chime in there. My boys have celiac and their improvement was very fast. Within the first week I saw immediate changes. And it's only getting better for them. We've been gluten-free for just over 2 months. Another possibility is getting genetically tested. It can at least rule celiac out (but not in).

mushroom Proficient
mushroom
Posted

Do you have or can you get a copy of your previous blood work to post here, assuming it was a celiac panel that they did, i.e.

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

If this is what you had done post the results with the ranges the lab uses so we can have a look at them. If you did not have that done you were not tested for celiac disease.

Wolicki Enthusiast
Wolicki
Posted

Do you have or can you get a copy of your previous blood work to post here, assuming it was a celiac panel that they did, i.e.

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

If this is what you had done post the results with the ranges the lab uses so we can have a look at them. If you did not have that done you were not tested for celiac disease.

Are you sure you have been stricly gluten free? Have you been careful about cross contamination, checked your meds, etc?

secretsauce Newbie
secretsauce
Posted
  • Author

Is it possible to redo the blood work you had done previously? The way you said it, made it seem like they checked vitamin/mineral levels? If so, that may be a possibility to see if the gluten-free diet is helping you absorb better. As far as time it takes to heal, I'm not sure in your case. Other, experienced members can chime in there. My boys have celiac and their improvement was very fast. Within the first week I saw immediate changes. And it's only getting better for them. We've been gluten-free for just over 2 months. Another possibility is getting genetically tested. It can at least rule celiac out (but not in).

The blood work was specifically to test for celiac as the reply below asked...

Do you have or can you get a copy of your previous blood work to post here, assuming it was a celiac panel that they did, i.e.

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

If this is what you had done post the results with the ranges the lab uses so we can have a look at them. If you did not have that done you were not tested for celiac disease.

I will try to get this info in the next day or two and reply here.

Are you sure you have been stricly gluten free? Have you been careful about cross contamination, checked your meds, etc?

very strict. We got gluten free oats. I dont think anything else we eat is at risk of cross contamination (rice and potato have replaced bread, hopefully try quinoa soon). We dont eat out much except at Chipotle but I think we will have to start going to some other places soon... cooking constantly is getting old. I dont take many meds just some allergy, advil, and multivitamin that says gluten free on it.
RiceGuy Collaborator
RiceGuy
Posted

very strict. We got gluten free oats. I dont think anything else we eat is at risk of cross contamination (rice and potato have replaced bread, hopefully try quinoa soon). We dont eat out much except at Chipotle but I think we will have to start going to some other places soon... cooking constantly is getting old. I dont take many meds just some allergy, advil, and multivitamin that says gluten free on it.

Not every Celiac can eat even the gluten-free oats. I'd suggest not having those for awhile and see how you feel. It can take months for some to feel better. Even longer for others. I was gluten-free for about six months before I noticed much of anything. I also never got most of the classic symptoms.

Do look over your kitchen utensils. Anything that can harbor particles can be giving you trouble. Gluten is sticky stuff, and will cling to surfaces which aren't very smooth. Cast iron pans, wooden spoons and cutting boards, scratched non-stick pans, etc. If you're toasting gluten-free bread, you need a dedicated gluten-free toaster - one which has never seen gluten. Also check dish soaps, shampoos and other skin/hair care products, etc. Don't lick postage stamps or envelopes - use the self-stick ones, and wash your hands after touching stickers and other thing with glue.

There are often other intolerances at first, especially to dairy. The top eight allergens are usually the ones to consider first, but they aren't always the culprits. So I'd also recommend avoiding dairy, soy, corn, eggs, nuts, peanuts, and shellfish.

Hang in there. You've come this far. Stick with it and make sure, before you give up on gluten-free. Although nobody can tell you how long it will take, at least you have seen a slight improvement. So you may be on the right track, and just have a few hidden sources of gluten or other offenders to weed out.

  • 2 weeks later...
secretsauce Newbie
secretsauce
Posted
  • Author

Do you have or can you get a copy of your previous blood work to post here, assuming it was a celiac panel that they did, i.e.

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

If this is what you had done post the results with the ranges the lab uses so we can have a look at them. If you did not have that done you were not tested for celiac disease.

Sorry for the delay, was sick (with a cold or something) and didnt feel like doing much for a while. I got a copy of the results but there's not a lot on here.

IgA <3

Total Serum IgA 286 mg/dl

There are three tests on the report that are noted "TNP-Reflex testing not required." Those are Endomysial Antibody Screen (IGA), Endomysial Antibody Titer, and TTG Antibody IGG.

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Roda Rising Star
Roda
Posted

FYI I'm one that reacts badly to gluten free oats. Like the other poster said, try avoiding them and see what happens. My main gi complaint was acid reflux. It was the first symptom to go away. Now if I am glutened it is the first thing to come back. I have noticed the longer I am without gluten and if I get glutened, smaller amounts now are setting me off. Just tonight I made a mistake and had a very little amount of hienz steak sauce. Hubby checked the lable and said it had malt vinegar it it. D**n how did I miss that? Heartburn is starting to kick in and I probably only ate about a nickle sized amount. Other symptoms that improved were gas/bloating and constipation that I didn't realize was related at the time. I had been like that most of my life. I'd say I had it long before I started having symptoms in 2006 especially since I was diagnosed with hashimotos in 2000.

tarnalberry Community Regular
tarnalberry
Posted

Sorry for the delay, was sick (with a cold or something) and didnt feel like doing much for a while. I got a copy of the results but there's not a lot on here.

IgA <3

Total Serum IgA 286 mg/dl

There are three tests on the report that are noted "TNP-Reflex testing not required." Those are Endomysial Antibody Screen (IGA), Endomysial Antibody Titer, and TTG Antibody IGG.

Your test results are a classic negative for celiac disease.

They didn't run the exact tests you requesd (looks like they left out the anti-gliadin IgG, at the least), but didn't give you quantitative results on three of them because they were below their range for negative.

If you had been gluten free for any significant length of time (say, more than a handful of days), your tests results are likely skewed, but there's no way of knowing how much. You can also simply be gluten intolerant, and test negative across the board. (You can also be in the very early stages of celiac, and just starting to experience intestinal damage, and blood tests won't register positive.)

Bottom line, if eating gluten makes you hurt, why do it?

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Most people with celiac/gluten intolerance need to eliminate dairy as well as gluten until their intestines heal. Continuing to eat dairy products can prevent the gluten-damaged villi from healing.

Once you've healed, you can try adding dairy back into your diet and see if you react.

Some people who are dairy-sensitive and even dairy-allergic find that they are fine with raw milk products.

If there is still no improvement in your joint pain, you might want to investigate the possibility of Lyme Disease. The classic first symptom of Lyme Disease is joint pain (fewer than half of all those diagnosed with Lyme actually have the "bull's-eye" rash, and even fewer recall having been bitten by a tick, so it may not be as far-fetched a dx as most people think).

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      Contact them.
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