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Just Glutened Myself Alot On Purspose To Identify Reactions


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#16 krystynycole

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Posted 12 August 2011 - 05:35 AM

It could very well be silent celiac or villous atrophy, but I won't go on about that because others have already talked about it.

It could also be related to PCOS. I have a friend of mine who was diagnosed with PCOS and a thyroid issue shortly before I went gluten free. We had very similar symptoms and I even considered getting tested for PCOS and thyroid. Maybe something to talk to your doctor about.
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#17 love2travel

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Posted 12 August 2011 - 06:27 AM

I agree with Skylark that if you can keep this up for a couple of weeks, get yourself tested. Is that how long a gluten challenge should be, experts? I've heart two slices of bread a day for two weeks.

It would be good to know for sure.


The equivalent of FOUR pieces of bread for THREE to FOUR MONTHS must be consumed for accurate results.
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#18 shayre

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Posted 12 August 2011 - 07:48 AM

Hi all! Okay it in 3 hrs it will be 24 hrs since gluten ingestion began. Still...nothing. I did eat a big bowl of raisin bran last night for dinner too. I am less bloated this morning, but I am always less bloated when I get up. I actually just had a BM...another surprise. I am steering clear of any more gluten though until I see a response or not.

I did check with my doctors about the PCOS and thyroid. None of them could explain how they would possibly manifest in that way. So I don't know. I don't know if Lupus can effect your digestive system or not, and I haven't been diagnosed...only speculation that it's mulling around in my body trying to make up it's mind. I still have symptoms of celiac disease currently, and have had them off and on. I don't think that I've ever reached 100% of my old self yet on any day that was good, but i get close now and then. I have had at least 3 different occassions where I consumed something with less than 20ppm gluten contamination in them over time. Each time, I had the same result...after a week or two...I kept going downhill everyday...feeling more sick and more sick. Then I'd figure the source out, and eliminated it...then I'd immediately start getting better. It seemed so clear. I would have a reaction to just standing in a bakery for a few minutes...usually facial flushing, brain fog and a little sick to my stomach. If I normally have those immediate reactions to this very day, then THAT is why I can't figure out why I'm not reacting to the large amount of ingested gluten. I guess that if I had reached a point where I didn't have any symptoms or reactions, then the "silent" theory would make sense to me. However, since I still have reactions and symptoms that come one...seemingly with gluten cc...then I am confused. I think that anything is definitely possible, whether or not I understand it...but SOMETHING should make some sense.

I saw a secondary GI specialist in December. They did a scope, biopsy, and a pill camera. I was off of gluten for a about a year and a half at that point(but before house was gluten free), and I was still having SOME symptoms and gut issues that I thought should be resolved by then. They saw nothing. I was already confused by that. This just complicates the confusion. If my gut were healed, then why am I still having gut issues...and other symptoms that SEEM to improve going gluten-free? The doc had told me that there are other less defined autoimmune diseases of the gut, but they didn't see any of those either. I saw something about "sub-clinical" celiac disease. Does anyone know what that is? Could it be something that effects all of my enzyme production? How would that effect my whole body?

Well, I am taking in every last bit of information and advice that you all are giving:) Thank you for that. I guess that the clock is ticking and I still have some time to wait and see. I will keep you posted.
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#19 GlutenFreeManna

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Posted 12 August 2011 - 08:33 AM

Hi all! Okay it in 3 hrs it will be 24 hrs since gluten ingestion began. Still...nothing. I did eat a big bowl of raisin bran last night for dinner too. I am less bloated this morning, but I am always less bloated when I get up. I actually just had a BM...another surprise. I am steering clear of any more gluten though until I see a response or not.

I did check with my doctors about the PCOS and thyroid. None of them could explain how they would possibly manifest in that way. So I don't know. I don't know if Lupus can effect your digestive system or not, and I haven't been diagnosed...only speculation that it's mulling around in my body trying to make up it's mind. I still have symptoms of celiac disease currently, and have had them off and on. I don't think that I've ever reached 100% of my old self yet on any day that was good, but i get close now and then. I have had at least 3 different occassions where I consumed something with less than 20ppm gluten contamination in them over time. Each time, I had the same result...after a week or two...I kept going downhill everyday...feeling more sick and more sick. Then I'd figure the source out, and eliminated it...then I'd immediately start getting better. It seemed so clear. I would have a reaction to just standing in a bakery for a few minutes...usually facial flushing, brain fog and a little sick to my stomach. If I normally have those immediate reactions to this very day, then THAT is why I can't figure out why I'm not reacting to the large amount of ingested gluten. I guess that if I had reached a point where I didn't have any symptoms or reactions, then the "silent" theory would make sense to me. However, since I still have reactions and symptoms that come one...seemingly with gluten cc...then I am confused. I think that anything is definitely possible, whether or not I understand it...but SOMETHING should make some sense.

I saw a secondary GI specialist in December. They did a scope, biopsy, and a pill camera. I was off of gluten for a about a year and a half at that point(but before house was gluten free), and I was still having SOME symptoms and gut issues that I thought should be resolved by then. They saw nothing. I was already confused by that. This just complicates the confusion. If my gut were healed, then why am I still having gut issues...and other symptoms that SEEM to improve going gluten-free? The doc had told me that there are other less defined autoimmune diseases of the gut, but they didn't see any of those either. I saw something about "sub-clinical" celiac disease. Does anyone know what that is? Could it be something that effects all of my enzyme production? How would that effect my whole body?

Well, I am taking in every last bit of information and advice that you all are giving:) Thank you for that. I guess that the clock is ticking and I still have some time to wait and see. I will keep you posted.



If I'm understanding you correctly then you were tested after being gluten-free for a year and half? If that is the case then it's no woder that you had negative biopsies! I think it may be time to do a gluten challenge for 2-3 months and get proper testing redone. You need to eat the eqivalent of 3-4 slices of bread everyday for 3 months to get accurate testing. Since it sounds like your symptoms are not very severe then you may want to do this.

As far as your bloating and constipation...how much fiber do you get in your diet when you are gluten-free? If you decide to go back to gluten-free and stick with it, maybe consider adding a fiber supplement such as psyllium husk to help with the constipation. Also look into probiotics, especially if you have been on antibiotics for any length of time in the past.
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#20 love2travel

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Posted 12 August 2011 - 08:52 AM

If I'm understanding you correctly then you were tested after being gluten-free for a year and half? If that is the case then it's no woder that you had negative biopsies! I think it may be time to do a gluten challenge for 2-3 months and get proper testing redone. You need to eat the eqivalent of 3-4 slices of bread everyday for 3 months to get accurate testing. Since it sounds like your symptoms are not very severe then you may want to do this.


Precisely! No wonder they were negative. Do not forget that there is an extremely high nevative result possibility. Not only that but only about 40% of biopsies done in the US and Canada are done correctly. It really is a sad state of affairs... :o
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#21 shayre

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Posted 12 August 2011 - 09:16 AM

If I'm understanding you correctly then you were tested after being gluten-free for a year and half? If that is the case then it's no woder that you had negative biopsies! I think it may be time to do a gluten challenge for 2-3 months and get proper testing redone. You need to eat the eqivalent of 3-4 slices of bread everyday for 3 months to get accurate testing. Since it sounds like your symptoms are not very severe then you may want to do this.

As far as your bloating and constipation...how much fiber do you get in your diet when you are gluten-free? If you decide to go back to gluten-free and stick with it, maybe consider adding a fiber supplement such as psyllium husk to help with the constipation. Also look into probiotics, especially if you have been on antibiotics for any length of time in the past.

First, I went through scope and biopsy right after I went gluten free. It hadn't been long, and I certainly hadn't worked through all of the areas where gluten might be. At that time, I had no idea what celiac disease really was. I was trying out gluten elimination, because I was testing maybe just having an allergy. When the biopsy came back negative, I dismissed it. Then I started doing the research, and found that I fit right in here. I went back to the doc with my consistent GI problems and frustration. His explaination was that the damage to my intestines meant that I wasn't producing the enzymes to digest any food, so it would sit undigested in my system causing bloating and constipation. He said that biopsies can be patchy, and the negative test doesn't mean that I don't have it. I had gotten the genetic test done for my kid's GI doc. When my doctor found out about my genetic predisposition and symptoms. He said that he knows that I have it, but he just can't prove it on paper. It was a year and a half later, that I was retested with another doc and they saw nothing. But I had made that appt. in the first place, because I was still having symptoms and digestive issues. All of those things had been much improved, but still it was hanging around giving me grief. That doc said, that all she could treat me for was IBS and wanted to put me on anti-depressives to desensitize nerves in my gut. I don't have depression issues, and she kept referring to pain in my gut with IBS that I don't have. Her explaination didn't feel in the least bit accurate, so I dismissed it. Do you know how things just feel right or not right in your heart? I felt that she was going down the wrong path.

The confusion is why I'm still not digesting food (supposedly) or having bloating/const issues with no sign of damage. The other symptoms I could relate to gluten sensitivity or allergy if need be. Yes, fiber has been an issue, but I have dealth with that aspect of my health since childhood...severe constipation and impaction. The doctors put me on everything high fiber, supplements, and medications over the years. Nothing really helps. The medication helped for a while, but then stops helping. Going gluten free helped a lot. For the first time, I was having a BM everyday. Then that stopped too. I take probiotics and enzymes, but I am looking into taking extra. They definitely help me, and if I miss a couple of days of probiotics I can tell. I don't take antibiotics, and haven't since before I went gluten free. The curious thing though, is that not long after my son was born...I was in sooooo much abdominal pain. Now I had a c-section, but I knew what that felt like from the first c-section. The pain wasn't subsiding, and it was getting worse....along with the nueromuscular problems. I was scoped, CT'd, ultrasounded, MRI'd, bloodtested and x-rayed... and no one knew why I was in so much pain. My primary doc said that he just wanted to experiment with a really strong antibiotic to see what happened. It worked. So once I figured out celiac disease, then I just thought that it must have been a gut infection or bacterial overgrowth. That explaination would also go right along with celiac disease. Now before all of this, my infertility specialist diagnosed me with classic PCOS. However, he said that it was a problem with the enzyme and not insulin. He said that thin girls with PCOS have trouble with the enzyme, and girls who have gained a lot of weight have trouble with the insulin. So where does that leave my enzyme production elsewhere in the body. Is there a disorder where enzyme production is affected? Could gluten just be causing me to have enzyme malfunction at different places in my body at a more cellular level...as opposed to attacks on the villi? So many questions.....

And my symptoms can be very severe. I can be rendered to the couch unable to take care of myself or my kids very quickly. That is why I have not yet done the gluten challenge...I'm terrified of it! As long as I stay on a very strict gluten-free diet, the symptoms come and go sometimes in a very mild way. Yet, once in a while, I'll wind up on the couch again. All along, I am thinking that it's gluten exposure...and have usually been able to track it...at least I thought so. If I don't have reactions to this gluten exposure from yesterday, and then not to a repeat exposure...then I will opt for the challenge and blood allergy testing. I have a friend who went through similar gut issues only, but she was also feeling depressed. She just did a blood allergy test that revealed an allergy to almost everything that she was eating. She ate very healthy. She also tested positive for gluten allergy. All of her gut issues have resolved now, and she is no longer bloated either. She doesn't know whether gluten is an allergy or celiac disease. Her doc told her that it wasn't celiac disease, but I asked her how in the world he would know that from just a blood test. No one has scoped her. Anyway, maybe blood tests my reveal something for me too.
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#22 shayre

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Posted 13 August 2011 - 05:22 AM

Precisely! No wonder they were negative. Do not forget that there is an extremely high nevative result possibility. Not only that but only about 40% of biopsies done in the US and Canada are done correctly. It really is a sad state of affairs... :o

What is "correctly"? If I have another, then I will try to make sure that it's done right.

Well, at 2:30 today it will be 48 hrs. So far...nothing. I'm exhausted, but I don't think that has anything to do with gluten. I took some Benadryl yesterday, and it wiped me out. Then my 2 yr old kept me up all night last night. I had a little bit of leg aches and slight restless feeling in them, but that is unchanged, as I felt that way all week already. Does anyone think that their reactions take longer than 48 hrs? Counting down...
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#23 love2travel

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Posted 13 August 2011 - 08:26 AM

What is "correctly"? If I have another, then I will try to make sure that it's done right.

Well, at 2:30 today it will be 48 hrs. So far...nothing. I'm exhausted, but I don't think that has anything to do with gluten. I took some Benadryl yesterday, and it wiped me out. Then my 2 yr old kept me up all night last night. I had a little bit of leg aches and slight restless feeling in them, but that is unchanged, as I felt that way all week already. Does anyone think that their reactions take longer than 48 hrs? Counting down...

Sorry - I should have clarified. When biopsies are done most surgeons only take 3-5 biopsies when it is essential that at least 8-11 (or even more) be taken from all over. It can be likened to doing soil samples - you must take many of them to get the true picture.

This experiment of yours is truly an interesting one! Curious to see how this turns out for you. Hope you are having a good day!
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#24 livelifelarge24

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Posted 31 August 2011 - 11:01 PM

How dis you end up? I don't think you're crazy, I struggle with multiple issues & often wonder which symptoms are from which. it can be very frustrating! It usually take me 24 hours for the diziness & emotional symptoms and then another 24 & the pain & GI issues start. What was your experience?
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"A man too busy to take care of his health is like a mechanic too busy to take care of his tools." - Spanish Proverb

#25 pricklypear1971

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Posted 01 September 2011 - 06:39 AM

I agree, if you ate Fair Food (yum), you got more than gluten.

I've thought of how to do a challenge and came to the conclusion I'd have to buy very good plain bread (wheat, salt, water, yeast, sugar) and eat ONLY that in addition to a gluten-free diet for a true wheat-only challenge.

So, if you're eating "normal" foods you'll never know if it's just wheat.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

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Hashimoto's DX 2005.
Gluten-Free since 6/2011.
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Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#26 GlutenFreeManna

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Posted 01 September 2011 - 06:44 AM

I agree, if you ate Fair Food (yum), you got more than gluten.

I've thought of how to do a challenge and came to the conclusion I'd have to buy very good plain bread (wheat, salt, water, yeast, sugar) and eat ONLY that in addition to a gluten-free diet for a true wheat-only challenge.

So, if you're eating "normal" foods you'll never know if it's just wheat.


Cream of wheat or whole wheat unsalted crackers would be better tests if you want to challenge. Or buy a small bag of whole wheat flour and make some crackers or pasta with just flour and water. With bread you won't know for sure if it's the wheat or the yeast or the sugar (or all three).
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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#27 pricklypear1971

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Posted 01 September 2011 - 07:26 AM

Cream of wheat or whole wheat unsalted crackers would be better tests if you want to challenge. Or buy a small bag of whole wheat flour and make some crackers or pasta with just flour and water. With bread you won't know for sure if it's the wheat or the yeast or the sugar (or all three).


Lol, I don't think I'd ever give up sugar (at least to the extent put in bread) so I wouldn't be "adding". I love cream of wheat, hadn't thought of that! Thanks.

I eat some gluten-free yeast breads so yeast would be null like sugar.

If I used non-iodized salt, salt would be null too.

Btw, I'd have to dump in a ton of applesauce, cinnamon and maple syrup to eat that cream of wheat. I could eat bread plain.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#28 Poppi

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Posted 01 September 2011 - 08:27 AM

I'm wondering if you are going to come back here complaining of symptoms. I don't think that you were stupid to gluten yourself on purpose. Since you don't have medical testing data to support eliminating gluten, it would seem the intelligent thing to do to be sure.

I agree with Skylark that if you can keep this up for a couple of weeks, get yourself tested. Is that how long a gluten challenge should be, experts? I've heart two slices of bread a day for two weeks.

It would be good to know for sure.


I was told 2-4 servings of high gluten foods for 3-4 months. I tried and lasted until lunch on the first day. Never again.
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Gluten free since April 6, 2011 ~ Also sensitive to coconut, coffee and food dyes

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#29 sreese68

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Posted 01 September 2011 - 02:25 PM

I've thought of how to do a challenge and came to the conclusion I'd have to buy very good plain bread (wheat, salt, water, yeast, sugar) and eat ONLY that in addition to a gluten-free diet for a true wheat-only challenge.


I found a way to test just gluten. I was afraid if I ate something with wheat flour, I wouldn't know if I was reacting to the fructans in wheat or the gluten. (I have fructose malabsorption, so fructans (chain of fructose) are an issue for me.) I bought vital wheat gluten flour, which is essentially a big bag of gluten. I cooked it in olive oil, kind of like it was a roux. Then, I put it on safe food. "Interesting" taste, but it did the job.
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#30 shayre

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Posted 02 September 2011 - 01:00 PM

Hi all. I'm sorry that it took so long to respond with the results of the testing. I did get hit with symptoms, and then both of my kids got sick with a virus that is still hanging on...then school and sport activities...been busy and way too tired. I did actually respond sooner, but I must not have hit reply...cause it's not here.

Okay, so the 48 hour mark passed, and i still had no additional symtoms...and I was less bloated. I ate the fair food on Thurs and Sat night I started feeling some symptoms starting at about 53 hrs. I had additional hand and foot pain. Then greater leg stiffness and more pain in my legs (my legs always are the most painful). Then some brain fog and some peripheral nueropathy was starting to come on. I just felt unwell and weak all over, but it wasn't that bad. I checked my temperature, which was 100.1. I ate more safe food and actually felt a little better. I went to bed and woke up feeling better on Sun, but then as the day wore on I felt worse. Around noon, the leg pain started coming on again. There was also a little nueropathy in the arms and hands, and I just felt weak. There was some brain fog. Symptoms were still on the mild side and vague for me. Do I know that this is gluten, or is this something else that happens to be flaring up.

My hubby and I had planned a date for that Sunday, so we went to Maggiano's to have some nice italian food. I really wanted to put "the nail in the coffin", so to speak...and be sure about what I was feeling. I had fried calamari, pasta plain with olive oil, and a whole loaf of bread with the olive oil. Oh, so good:) As we were leaving, I noticed a little increase in leg stiffness. Then my muscles just got really tight and uncomfortable in my back, shoulders and neck...just all knotted up. More hand and arm nueropathy, and more muscle stiffness. It still wasn't as bad as I expected. I had another bowl of raisin bran for dinner. At bedtime, I had lots of achy leg pain and stiffness. I had to scoot my legs for a few steps when standing from sitting on the couch... just to get them working again. I still had a fever and still just felt unwell. I took 2 Aleve.

Monday I woke up with muscle and joints achy and stiff. They were all very kinked up an knotted. Still nueropathy. Still less bloating, but still severe constipation. I did have a small BM though on both days that i had gluten. Weird.

Now I've just been trying to get better since then. I still have issues, so I don't know if I'm being glutened from something, or I'm still screwed up from the gluten that i ate. See? It's still not very pronounced, because I had symptoms before I ate gluten...suspecting contamination. Then the test results didn't prove to be as clear as I had hoped. And now, I'm still having better and worse days. I should be getting better little by little. However, the night before last....I was in so much pain that I was holding back tears. I almost could not stand the pain...it was in my legs mostly. It has just been on and off. Again, I'm left wondering...is it gluten, is it oat cc from my family, is it Lupus having nothing to do with gluten, is it my kid handling playdoh in kindergarden (he washes up there though)? Frustrating!

What I took away from the experiment was that I DO actually have a reaction to gluten, and that my reaction time is 2-3 days. That helps when I'm trying to figure out what I ate that effected and when. However, I am not totally convinced. I might try it one more time when I am actually feeling good to start with...if that day ever comes. I come from a physiology background, so I believe in the "test and retest theory" to eliminate doubt. I really don't know what I'm doing, I guess! I did notice that my reaction to potatoes is pretty much the same as the gluten reaction that I just got...severe leg pain. I also have the same general symptoms come on when I've been sick, or have gotten a vaccination. That does convince me that it's autoimmine and inflammatory, just not convinced which one...or combo. Thank you all for you support and advice! Love you all:)
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