abaker521

Thank you both very much! I feel much better now. I did specifically ask the pharmacist and he said "it has gluten in it" but I agree it didn't make much sense. Maybe he was confused? I appreciate the responses!

I'm looking for some thoughts and advice regarding gluten in injections. I have to take a new medication and my pharmacist said it does contain gluten. I have celiac disease so obviously it seems counter intuitive to give myself a shot which contains an ingredient my body hates. Unfortunately there are no substitutes for this medicine but I only have to be on it for 10 days. My GI doctor thinks that because I'm not taking the medicine orally, I shouldn't have a reaction from it. He didn't really seem certain though. Does anyone know more about this? I don't react topically to gluten, it's never affected my skin or anything. Hoping it won't be a problem!

I was diagnosed with Celiac back in September and just last week tested positive for primary hemochromatosis (I'm a C282Y homozygous, meaning I received the mutated gene from both parents). I never really got better despite going gluten free and I think it's because I have very elevated iron levels. I'm meeting with my doctor next week to figure out a course of action (if I need a liver biopsy or not). I'm only 27 so I'm happy I figured it out now I guess. Unfortunately, my father currently has stage four primary liver cancer, but I don't know if it's attributed to hemachromatosis or not. I hope not as his cancer might have been prevented if so.

Some of my symptoms include: bronzed/orange skin, irregular menstrual cycles, thinning hair, brain fog, metallic taste in mouth, joint pain, loose stools, depression and fatigue.

I am not thrilled that I have to get blood drawn.. but if it means I'll feel better then I'll try anything!

I was diagnosed with celiac disease last September and immediately eliminated gluten from all aspects of my life. I wouldn't even let my husband bring it in the house! I started to feel better.. but then I noticed weird symptoms began surfacing again about three months into the diet. Of course I thought it was CC or other food sensitivities so I became even stricter (stopped eating all grains and dairy). Still didn't feel any better. I had all my bloodwork retested and discovered I was vitamin D deficient so I started taking supplements everyday and didn't notice much difference there either. Aside from that the only lead I had was that I had very high ANA, macrocytosis (enlarged red blood cells, which wasn't from the obvious causes of alcohol, folate of B-12 deficiency) and I had high iron (my primary care doctor didn't even blink at that).

From February until now my hair has gotten extremely thin, my nails look totally wacky (the white part extends way down into my nail bed. They are also very brittle) my menstrual cycle isn't regular, I have constant brain fog, my skin looks orange (even though I rarely go in the sun), my joint hurts (especially in my hands and feet) and on any given day I'm an emotional mess. I had a colonoscopy and endoscopy done and my GI doctor said my villi are all healed from celiac. He also removed some benign polyps. Other than that I was fine. I went to an RA for the high ANA and he tested for every autoimmune disorder under the sun - including lupus - all came back negative. I was literally at my wits end!

My GI doctor mentioned that it was unusual that I had an elevated iron level considering I don't take supplements, I don't eat much red meat, and I menstruate. I didn't consider the high iron, because as a female you are always told you're going to be anemic and you always need iron. He ordered the test for hemochromatosis and come to find out I have the genes from BOTH parents (I'm C282Y Homozygous). Hemochromatosis matches almost all of my symptoms so I'm going to go to a hematologist soon for treatment. I REALLY hope that resolves everything.

I find it so strange that I developed celiac disease and hemachromatosis almost at the same time. Does anyone else have the same thing? I am also curious is this has caused my unexplained macrocytosis since iron plays a large roll in red blood cells. Still not sure why my ANA is so high, but hopefully that will resolve on it's own eventually. I want to he healthy again!

That's good to know Celtic! I'm sure it would be better to wait a year before I get re-tested, but it can't hurt to do it now I suppose. I've been gluten-free for about 6 months. Do you remember what your ANA titer and pattern was? Mine was 1:1280 with a homonegenous pattern. My doctor never even discussed this with me. I accidentally came across it when I was faxing my medical records to a new doctor. I didn't even know what it meant.. looked everything up online then freaked out!

You are so right about the grass being greener. All my life I was tiny on top and larger on the bottom. I just wanted to be more proportioned so I decided to get the surgery. Yes I look much better in t-shirts.. but I think it took me having larger breasts to know they don't really make me feel all that different. If anything, they are just causing me more pain than they're worth!

Thanks for that information Gemini. I wish I knew more about my body and genes before I had the procedure.. but what can you do..

I met with my doctor today and he was very supportive. He doesn't think the implants are causing me the issues, but he said that if my other doctors recommend I get them removed he'll do it free of charge and it's an easy procedure. He said I should bounce back because I'm young. Honestly I don't care about my figure.. I just want to feel better! I have an appointment with a new GI doctor at the end of the week and another appointment with an immunologist. I'll see what they say and will definitely get my ANA tested again. At the end of the day if I have to get them removed, I'm okay with that. It's my husband I feel bad for! haha.. he's amazing though and only wants to see me healthy too.

Thanks for all the support here. I really appreciate it!

Funny.. I've recently been having jaw pain too. It comes and goes but it's definitely annoying. Honestly though, I think a part of it has to do with anxiety. I tend to clench my teeth when I'm anxious and I don't notice it. Keep me posted though if you find an answer.. perhaps it has to do with a vitamin deficiency too?

I was on birth control for 4 years and about the same time I was diagnosed with celiac I stopped taking it (because by husband and I want to TTC eventually and my insurance no longer covered by birth control). My periods have been 35-40 days ever since and are super heavy and painful. Despite going strict gluten-free.. I still have some odd symptoms that lead me to believe I might be intolerant to other foods I don't know about yet? Either way I definitely notice a difference in that department. I'm becoming more regular (fortunately) because I'm finally putting on weight.. but man, I would die if I didn't have advil around that time of the month!

Thanks for looking up all the information Skylark! I've been doing some research too and there are a lot of reported cases similar to mine.. but I know that celiac disease can cause some pretty wacky symptoms too. It's just strange that I'm not getting much better, and actually seem to be developing other odd symptoms. It could be I have another underlying autoimmune issue or that the implants are just making me sick..OR that I'm taking longer than normal to heal. I don't think I'll ever know.. but I will definitely follow up with my doctors. I'm 27, pretty athletic, and very healthy from a dietary standpoint. I eliminated dairy, almost all grains, corn (although it's in everything so I have to be more careful) and I take a multi-vitamin everyday. I want so badly to be healthy and to stop thinking that I'm a "ticking time-bomb"..on a daily basis I never know if I'm on the road to recovery or just getting sicker.

I think you got it right Bubba's Mom.. we become anxious when we don't notice results right away. That's definitely where I am right now! Blah

Thanks for all your input everyone. I have an appointment with my doctor tomorrow and I'll let you know what he says.

Thanks for your input you two. I've been killing myself over it. I can accept that I have the genes for autoimmunue diseases.. but I can't cope with the notion that I've made myself sicker or caused my health issues by getting unnecessary surgery. The high ANA is what really bothers me.. but I had that test done when I was first diagnosed with celiac back in September. I've heard of it coming down after going gluten free? I guess I could get it retested and see..

To be honest I think I know exactly what triggered my celiac.. I started a new job, moved to a new town, got married, and found out my dad had stage four liver cancer all in one month. Bam.. stress upon stress. I wouldn't doubt I had it before that too.. but I never had major symptoms until around that time.

I'm still weighing my options about my implants though. I just have so much anxiety over it.. but I don't want to "disfigure" myself if I don't have to. At the end of the day they are uncomfortable so I should probably have another consult with my doctor. Arg... I know I just need to give it more time and see. Thanks again for letting me vent here!

Hi Everyone,

Not sure where this post belongs but I wanted to reach out for some advise/opinions.

Two years ago I decided to have a breast augmentation. This decision took years to make and after I found a very reputable doctor I decided I should just go for it. I was 25. Fast forward two years, and I have full blown celiac disease, HIGH ANA levels, elevated liver enzymes, thinning hair, jaw pain, and my chest is just always uncomfortable. I thought when I was diagnosed with celiac, that was the answer to my health problems. I've been strict gluten-free for 6 months (recent bloodwork still shows elevated tranglut levels but normal gliadin levels).. but now I'm wondering if it's my implants. I'm sure autoimmune issues is in my genes, but now I'm concerned I just added fuel to the fire. In the next few weeks I'm going to run some more bloodwork and meet with a new GI doctor.. but I'm seriously regretting getting the surgery. Looks mean nothing if you're unhealthy and unhappy. My husband thinks I'm over-thinking it too much, but I just have this "gut" feeling that I can't shake. Any advise or opinions are appreciated. I know this sounds like a very "first world" problem.. but it's a big decision to get them removed.

The NARS cosmetic line is gluten free. This is what they listed on their site:

"NARS does not use any gluten or gluten derived ingredients in its products. Therefore we consider our products to be

I am so so sorry Jess. I know words won't do much good now but just know that when things happen that are out of your control there's always a reason. Nature is smart. I know everything will work out for you soon and you'll have the baby you've been trying for. As you know I'm sort of in the same boat.. I want to have a baby very soon but I feel like my body just isn't healing as fast as I'd like. These things take time unfortunately and can be so very frustrating. My heart goes out to you.

I replied to you in a PM but will add that from your blood work, it doesn't look like gluten is the culprit. Your gliadin IgA has come down very nicely and that's the test for compliance. Feeling crummy can come out of nowhere for anyone and eliminating dairy for now is probably a good idea.

I developed a problem with dairy 2 years into the diet. I can eat very dairy lite now but will never be able to eat a bowl of ice cream or pudding again.

A spoonful is OK but a bowlful will have me spending the day near a bathroom. It is not unusual for people to develop a problem with dairy after months on the diet. You may not have noticed it before because the gluten reaction was worse and masked the dairy reaction. A dairy reaction can mimic a gluten reaction 100%...it did for me.

You may not have to avoid the rice chex completely but don't overdo any one particular food or you'll overload the system. You are doing well so keep it up and expect to have to some off days. We all do!

Thanks so much for all your VERY helpful information!! You told me 100% more than my own doctor.. who immediately scheduled me with a dietitian because he said I "wasn't following the diet." UGH! I have definitely cut out dairy and probably need to lay off all the fruits and veggies.. most likely over-doing the fiber lol. I feel best in the morning then it gets worse during the day (severe bloating, fatigue, feeling spacey). Can other autoimmune disorders cause an elevated Transglut IgA/tTg? Thanks again for your help!

Are you still having symptoms?

Yes I'm still having some symptoms unfortunately.. bloating..brain fog..mood issues.. but they certainly aren't as severe. My BM's are a bit better I suppose? ...perhaps it's just all hormones too. I went out birth control a few months back and I know my body is still recovering from that too. I went off dairy so hopefully that will help!

OK! I finally got my test results sent to me and I'm utterly confused (such a newbie, sorry!)..

When I was first diagnosed back in September these were my results:

Gliadin AB (IGA) 51.0 Unit/mL (high)

Transglut IGG 3.4 unit/mL (normal)

Transglut IGA >80 unit/mL (high)

Gliadin IGG 10.5 unit/mL (high)

These were my results from a week ago (he only tested the following two):

Gliadin AB (IGA) 5.3 Unit/mL (normal)

Tranglut IGA 61.6 (high)

..can anyone help me interpret these results? It looks like my Gliadin IGA went down to normal range but my Transglut IGA is being stubborn.

I'm determined to conquer this! ..thanks in advance for your help!

This is very true IrishHeart! I can tolerate my vitamin D3 supplement just fine.. but when you start mixing in tons of other things I just can't tolerate it. I know I'm still in serious healing mode so I'm trying to be extra careful, but at the same time I want to make sure my body is getting all the nutrients it needs (especially since we really want to try for a baby in a few months). My doctor also recommend that I take the probiotic Align, but I'm hesitant because I don't know how I'll react. It's scary sometimes to realize how sensitive and complex our bodies can be!

This is great info! I've gotten sick off of Rainbow Light and New Chapter Prenatal vitamins. Does anyone recommend a good prenatal vitamin for a super sensitive? I'm still looking for one I can tolerate..

I am discovering I'm a "super sensitive" celiac too and got sick off several vitamins that were organic and labeled "naturally gluten free." I too just discovered I was low on vitamin D (my level was at 19 when normal is around 30-40). My doctor recommended 400IU daily.. which seems very minimal compared to other dosages I'm reading here. I went to Walgreens and got D3 in the "Finest Natural" brand. I have been fine using it so far. It makes me laugh because I used to buy the most expensive, organic vitamins and they all made me sick.. but a $3.00 brand from Walgreens works best for me. My body is silly.

I'm in the same boat! I have two cats who both eat Science Diet (one of my cats literally grabs the good with her paw and puts it in her mouth like a human).. so it's no wonder I'm getting CC'ed!! They like dry food but we give them wet food as a treat. Where can you purchase Merrick? Do any of the large pet stores carry anything wheat and gluten free? Has anyone has issues with Cat Litter? I recently switched to the Arm & Hammer brand but I'm not sure what the ingredients are.

Thanks!

I appreciate the encouragement. I just got a call from the nurse this morning and she said I'm low on vitamin D so she suggested I get vitamin D3 (400IU) supplements. This was funny to me considering I live in Florida and I was just laying out in the sun last weekend! They also referred me to a dietitian. I swear, if they just tell me to "stay away from gluten and eat produce" I'm going to lose it. That's exactly what I've been doing.. and then some! lol ...I have developed a love affair with gluten-free Rice Chex so maybe I need to avoid that too. I think the worst part is the guessing game and the constant fear of "is this going to make me sicker." I know I'll get there.. it just takes time I guess.

Thanks for the replies ..yes I have requested to have my tests sent to me then I'll definitely post them. I felt great last week but over the weekend at the health food store, I had a sample of a new 'gluten/dairy free' protein bar only to find out it had wheatgrass in it. That was Saturday then my test was on Tuesday.. so perhaps that's it? I still feel like the gluten is making it's way out of my system. I've had sharp lower abdominal pains, distended belly, brain fog, and those oh-so-lovely mood swings. ..I'm feeling slightly better today, but this was really took a toll on me. Had my first 'celiac breakdown' yesterday LOL. Thank goodness I have a patient husband!

I'll be back with the test results shortly. Thanks again!!

Hi Everyone -

I've been feeling crummy all week so it was no surprise that after my bloodwork was done on on Tuesday the nurse told me I still had elevated celiac antibody levels. All she said was back in September before I was gluten-free, I was at 80 and now (5 months gluten-free) I'm at 61. I have been soo strict.. not only with food, but with CC and also beauty products. Does anyone know if antibody levels can spike from foods other than wheat, barley and rye? Can corn or oats cause this? I recently cut out dairy and coffee too, just in case. I'm going to find a specialized, even if I have to go out of state. I never had a biopsy done because my doctor didn't think I needed it. Also, they only tested 2 out of the 6 things on the celiac panel. Not sure why. Lately, I'm just been super bummed. I'm trying so hard but getting nowhere. ..blah

That's great new jswog!! I too find it remarkable that my period returned after just two weeks of going gluten free. It's still a bit wacky though (about 37 days apart).. but hopefully I'll get more regular soon. I think I just need to put on a few more pounds perhaps.

I have become slightly fanatical as well about gluten. Two weeks ago I officially banned it completely from the house. I also cut out dairy and my morning coffee. I have definitely noticed a difference!

Regarding the Rainbow Light vitamins, it was posted by someone else in this forum. I have no concrete facts to back that up. I just bought some New Chapter Perfect Prenatal vitamins today so I'm crossing my fingers those sit well with me.

Congrats again & thanks for the tips!!

That's great upwith! Keep me posted! I think we're going to start trying around May, depending on if I can get my body healthy again. Fingers crossed.