Newly diagnosed Celiac

[jackelynamills]

Hi, Happy to have found a support option. This is all a bit overwhelming! Since November I have been absolutely miserable. Initially I was sent to a rheumatologist to be evaluated for rheumatoid arthritis. I am grateful that I do not have it but Celiac is a whole new world. I have never even considered Gluten and I have a lot to learn. I had gastric sleeve surgery ten years ago and it seems this may be possibly be related. At this point I know I am anemic, I have horrible pain and swelling in my knee area in particular but notice it other areas at times. I mention my knees because they are so uncomfortable it is unbearable at times. I have worked to eliminate Gluten from my diet and identify with the ravenous hunger so I may be getting something right but I still have incredible inflammation in my knees. I have found out there may be enzymes I may be able to take that could help my body process or help? Are there things I can do to get this out of my system quicker-(Gluten). I am nearly off my feet with this stuff and been in considerable discomfort since November. I am suspect Celiac has been an undiagnosed issue for a long time in my case and I am so miserable I am prepared to do whatever it takes to get my life back. Any suggestions or guidance will be greatly appreciated especially concerning a way to deal with the inflammation or resolving the effects of whatever is happening in my knees!

Thank you!

[trents]

Welcome to the forum jackeylanamill!

May we assume you have been officially diagnosed with celiac disease? How was that done and how long ago?

There is a real learning curve when it comes to totally avoiding gluten. Studies show that most people who believe they are eating gluten-free are actually eating lower gluten. I am attaching this article to help you evaluate potential sources of small amounts of gluten that you could be overlooking.

The other thing that could be causing you problems is nutrient deficiency. The damage done to the villi of the small bowel, which is the organ responsible for absorbing nutrients from our food, can cause malabsorption, even though you may have been eating well. The villi often take around two years to completely heel once you go on a strict gluten-free diet. So, we recommend vitamin and mineral supplementation to support the needs of the body in the meantime. I would recommend a B-complex, 5000mcg of D3 and magnesium to start with. With the magnesium, choose a form that is easily assimilated and go easy on it until you find how much you can take without getting a laxative effect.

Edited February 24, 2022 by trents

[jackelynamills]

3 minutes ago, trents said:

Welcome to the forum jackeylanamill!

May we assume you have been officially diagnosed with celiac disease? How was that done and how long ago?

There is a real learning curve when it comes to totally avoiding gluten. Studies show that most people who believe they are eating gluten-free are actually eating lower gluten. I am attaching this article to help you evaluate potential sources of small amounts of gluten that you could be overlooking.

The other thing that could be causing you problems is nutrient deficiency. The damage done to the villi of the small bowel, which is the organ responsible for absorbing nutrients from our food, can cause malabsorption, even though you may have been eating well. The villi often take around two years to completely heel once you go on a strict gluten-free diet. So, we recommend vitamin and mineral supplementation to support the needs of the body in the meantime. I would recommend a B-complex, 5000mch of D3 and magnesium to start with. With the magnesium, choose a form that is easily assimilated and go easy on it until you find how much you can take without getting a laxative effect.

Hi and thanks for replying! I was diagnosed last week finally. There were numerous test preformed over months. The most recent were lab tests involving blood and stool samples. I appreciate the article and the advice. My main concern is getting back on my feet as you can imagine. My knees are killing me and at this point I would comply with any suggestion to rid myself of this issue. I understand about the hidden gluten and thought prior to the actual diagnoisis it was time to strongly consider my diet. I was eating mostly vegan for the past year but only over the past three months has gluten been a consideration. The only deficiency my blood work is showing is anemia. Are there other tests I should insist on. I am 60 soon to be 61. 

Thanks!

[trents]

There is some controversy over the use of stool samples to diagnose celiac disease. The two types of tests for celiac disease that are widely recognized by conventional medicine practitioners are 1. Serum antibody tests and 2. an endoscopy with biopsy of the small bowel lining. Normally, the serum antibody tests is performed first and if the numbers are high enough many physicians will forego the endoscopy/biopsy. If the serum antibody tests are negative or weakly positive and symptoms of celiac disease are present,  a physician may also order the endoscopy/biopsy. Here is an overview of the serum antibody testing that can be done for celiac disease: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Can you speak more precisely to the kind of blood tests that were done? Do you have a record of the results or access to them and would you be willing to post them on the forum?

I just want to probe the issue with you of possibly being misdiagnosed by someone who didn't do the proper testing to arrive at a diagnosis of celiac disease. We sometimes get this with new forum members who aren't yet savvy in how all this is done. Was this a conventional medicine doctor who ran these tests or like a naturopathic doctor?

[jackelynamills]

Hi

Thanks for your reply! And...you are right I have been down the road of misdiagnosis  for the past twelve years. The blood tests preformed were numerous I do recall one the article mentioned IgA Endomysial antibody (EMA)-I am 100 percent positive this has been my ongoing issue for at least the past 6 years with so many symptoms including crazy itchy rash, nausea, vomiting, anemia, fatigue, brain fog, inflamation and pain in joints muscles. The pain and inflammation in my joints have nearly taken me off my feet. I have been on high doses of pain meds. for years due to deg. disc disease and without these meds. I definitely would not have been moving. At any rate within a few days of getting the gluten out of my diet I began improving. It has been back and forth for a bit because I have made mistakes about all the places gluten may be hidden including shampoo, conditioner and moisturizers uggg. I still have a small amount of pain and inflammation in my left knee but it is all but gone in right knee, foot ankle.

I appreciate the heads up I am always questioning and skeptical. I have been so ill for so long this diagnose is oddly more of a relief than one may think. I feel blessed that it is not ideal yet preferred over other possibilities!

The doctor who finally ordered the tests and became suspect of celiac is an older doctor who I was referred to because they suspected RA. He is a rheumatologist.

Thanks again for the input I am excited to learn as much as I can to aid in my healing!

Jackelyn

[knitty kitty]

@jackelynamills,

There's a connection between having a Gastric sleeve and Celiac Disease.  Gastric sleeves reduce the area where vitamins are absorbed just like in Celiac Disease.  After having a gastric sleeve, some people develop Celiac Disease.

You should be checked for vitamin deficiencies.  Deficiency in Vitamin D will cause joint and bone pain like you describe.

Celiacs can have difficulty absorbing fats.  Unsaturated fats, omega threes, will help lubricate your joints.  

Discuss with your doctor the benefits of supplementing with a B Complex vitamin and Vitamin D.  

Here's so more information...

"Bariatric surgery and long-term nutritional issues"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5700383/

And...

"The association between vitamin D concentration and pain: a systematic review and meta-analysis"

https://pubmed.ncbi.nlm.nih.gov/29559013/

And...

"Dietary Fat Intake and Radiographic Progression of Knee Osteoarthritis: Data from the Osteoarthritis Initiative"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5140767/

Hope this helps!

[Russ H]

I hobbled around like an old man for years with painful foot and knee joints and Achilles' tendonitis. It has gradually resolved over 6 months or so since I was diagnosed and went strictly gluten free. My Achilles' tendons are still a bit stiff sometimes but improving and nothing like they used to be. Today, I did a 16 mile walk up over the moors. Glorious weather and no pain at all - the most exercise I have been able to do for years. Stick at the diet, it is difficult at first but you get used to it. As the autoantibody levels fall, you will feel much better but it takes time.

One thing that might be worth checking if you can get it is a scan for osteoporosis. Long term impaired mineral absorption means that coeliac is a risk factor for this.

[jackelynamills]

On 2/25/2022 at 3:20 PM, knitty kitty said:

@jackelynamills,

There's a connection between having a Gastric sleeve and Celiac Disease.  Gastric sleeves reduce the area where vitamins are absorbed just like in Celiac Disease.  After having a gastric sleeve, some people develop Celiac Disease.

You should be checked for vitamin deficiencies.  Deficiency in Vitamin D will cause joint and bone pain like you describe.

Celiacs can have difficulty absorbing fats.  Unsaturated fats, omega threes, will help lubricate your joints.  

Discuss with your doctor the benefits of supplementing with a B Complex vitamin and Vitamin D.  

Here's so more information...

"Bariatric surgery and long-term nutritional issues"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5700383/

And...

"The association between vitamin D concentration and pain: a systematic review and meta-analysis"

https://pubmed.ncbi.nlm.nih.gov/29559013/

And...

"Dietary Fat Intake and Radiographic Progression of Knee Osteoarthritis: Data from the Osteoarthritis Initiative"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5140767/

Hope this helps!

Thank you so much for your insight! I took your advice about the vitamin D a few days ago and I do not know if it is a result of the zero Gluten diet or the added vitamin D I have been ingesting but I am almost a new person! I still have a long ways to go. Honestly, I felt pretty hopeless and beginning to wonder if I would make it. I am not 100 % sure but since finding this site and listening to some advice I have improved at least 40% and that is a pretty good average in less than a week after trying everything else since November. Today my left knee is a bit stiff but nothing like the excruciating pain along with my knees feeling so stiff that it felt like I had ten pound water bags strapped tight to each knee...stiff and so painful. There is no pain present at all in any of my other joints, completely gone where as I was experiencing joint pain in right foot, wrists, shoulders, hands, hips and feet/ankles! 

Can a vitamin D deficiency and Gluten really reak all this havoc? Apparently so! I was skeptical about the vitamin D deficiency  because I was recently screened for my yearly follow up blood work from gastric sleeve surgery. It showed anemia, another missed clue however, no other deficiency's were noted. I take regular supplements and did not realize until recently deficiencies will not show up in your blood tests if you take supplements regularly, you will only see the result of what was put into your body over the past twenty four to forty eight hours. Clearly the recent changes I have made are making an enormous difference! Thank you so much knitty kitty! I am understanding how important vit. D is. I am looking into good sources for the vitamin and other information/ suggestions that you provided. I can not thank you enough it is honestly like throwing me a life preserver. I was in incredible pain!

[jackelynamills]

On 2/25/2022 at 4:34 PM, Russ314 said:

I hobbled around like an old man for years with painful foot and knee joints and Achilles' tendonitis. It has gradually resolved over 6 months or so since I was diagnosed and went strictly gluten free. My Achilles' tendons are still a bit stiff sometimes but improving and nothing like they used to be. Today, I did a 16 mile walk up over the moors. Glorious weather and no pain at all - the most exercise I have been able to do for years. Stick at the diet, it is difficult at first but you get used to it. As the autoantibody levels fall, you will feel much better but it takes time.

One thing that might be worth checking if you can get it is a scan for osteoporosis. Long term impaired mineral absorption means that coeliac is a risk factor for this.

Thanks so much for the encouragement. It is great to know that there is hope. This felt like it came on so suddenly but now that I think about it, I have likely been experiencing many symptoms for years; attributing them to osteoarthritis, fibrosis, degeneration disc disease, depression all pre diagnosed conditions. Having these challenges for so long it was difficult to detect new symptoms until they were to the point of being unbearable. Beautiful photo! Thanks again for the hope!

[knitty kitty]

@jackelynamills,

Yes, Vitamin D can make that big a difference!  

Thank you for your wonderful reply about your results!  It's brought me to tears.

Hearing results like yours gives meaning to the fifty plus years I struggled alone on my journey to a Celiac diagnosis.  

Thank you! 

[Quanika Carter]

I was recently diagnosed with celiac disease last week Wednesday with and colonoscopy and Endoscopy I had my surgery that Monday I took a pregnancy test today two of them and I’m pregnant! I am in fear because I just got diagnosed and they didn’t tell me I was pregnant I’m shaking on tears because I’m so new to this I don’t know how damaged I am I’m catching panic attacks because I’m pregnant with a disease I just got diagnosed with and know little about. I’m going to lose the baby this is all bad 😢😢 not only that my health as well. I’ve been Eating gluten-free but the problem is finding out both so close 😢

[trents]

Quanika, welcome to the forum!

Celiac disease does damage to the villi that line the small bowel. This area of the intestines is where we absorb the nutrition from our food. Consequently, people with celiac disease typically develop nutritional deficiencies. That you are not nutritionally compromised as you carry your baby is of utmost importance. To offset the possible/probable vitamin and mineral deficiencies you may be experiencing I would strongly suggest you start taking an adult multivitamin, B-complex and D3 (5000 IU). It is very important as a pregnant woman that you get plenty of folic acid (folate), which would be in the multivitamin and the B-complex. Don't worry, there is no real danger of toxicity from B-vitamin supplementation as they are water soluble. Make sure you get gluten-free vitamins and supplements. Costco's Nature Made line is a good choice.

It is important that you get up to speed on the learning curve of how to eat gluten free so that your gut can heal as quickly as possible. It is a challenge. This might help you get a jump-start:

 

Edited February 28, 2022 by trents

[Quanika Carter]

5 minutes ago, trents said:

Quanika, welcome to the forum!

Celiac disease does damage to the villi that line the small bowel. This area of the intestines is where we absorb the nutrition from our food. Consequently, people with celiac disease typically develop nutritional deficiencies. That you are not nutritionally compromised as you carry your baby is of utmost importance. To offset the possible/probable vitamin and mineral deficiencies you may be experiencing I would strongly suggest you start taking an adult multivitamin, B-complex and D3 (5000mg). It is very important as a pregnant woman that you get plenty of folic acid (folate), which would be in the multivitamin and the B-complex. Don't worry, there is no real danger of toxicity from B-vitamin supplementation as they are water soluble. Make sure you get gluten-free vitamins and supplements. Costco's Nature Made line is a good choice.

It is important that you get up to speed on the learning curve of how to eat gluten free so that your gut can heal as quickly as possible. It is a challenge. This might help you get a jump-start:

 

Thank you so much for replying this is my support group I read and browse on here everyday I’m so thankful for this site and the genuine people associated with this. Because it’s so hard to cope right now but you definitely calmed my nerves a lot thank you! Thank you ! Thank you! 

[knitty kitty]

@Quanika Carter,

Welcome to the forum and congratulations!

Get checked for vitamin deficiencies before you start supplementing vitamins and minerals.  Once you start supplementing, blood tests for vitamin deficiencies will pick up the supplements you have been taking and that will mask any deficiencies you actually have.  

Your doctor will be able to refer you to a nutritionist who can help you learn about a healthy gluten free diet full of nutrients for you and the baby both.  

Your OBGYN will probably prescribe prenatal vitamins.  Your OBGYN could also check for vitamin and mineral deficiencies now and keep an eye on them throughout the pregnancy.  

Important vitamins during pregnancy include B12, folate, iron, and Vitamin D, but also Vitamin A and Vitamin C, as well as minerals like calcium and magnesium and the other B vitamins.  

Start keeping a food/mood/poo'd journal in which you can record everything you eat.  This will help you pinpoint any foods that cause problems.  Having an accurate record will help your nutritionist plan a balanced diet for you and Baby Q.  Some newly diagnosed Celiacs have a problem digesting dairy products, so you may need alternative sources of calcium.  The calcium in green leafy vegetables (kale and collard or turnip greens) are actually more absorbable than the calcium in dairy.  

You may want to look into the Autoimmune Protocol diet, a Paleo diet scientifically proven to promote healing in Celiac Disease.  Dr. Sarah Ballantyne, a Celiac herself with Celiac children, designed the diet.

You are capable of doing this!  I've every confidence in you! You're being proactive from the start!  We will be here to help all we can! 

Remember to breathe.  You're going to be a great mom! 

 

[Wheatwacked]

 

21 hours ago, Quanika Carter said:

I’m pregnant!

Congratulations!

https://med.stanford.edu/news/all-news/2009/08/low-choline-levels-in-pregnant-women-raise-babies-risk-for-brain-and-spinal-cord-defects-study-shows.html

The RDA for choline in Pregnancy is 450 mg per day. "The DV for choline is 550 mg for adults"; "In adults, the average daily choline intake from foods and beverages is 402 mg in men and 278 mg in women."; "Plasma choline levels do not decline below 50% of normal, even in individuals who have not eaten for more than a week". https://ods.od.nih.gov/factsheets/Choline-HealthProfessional/.  Liver, eggs, beef or Phosphatidyl Choline supplements. Blood tests are not indicative of intake.

[Quanika Carter]

6 hours ago, Wheatwacked said:

 

Congratulations!

https://med.stanford.edu/news/all-news/2009/08/low-choline-levels-in-pregnant-women-raise-babies-risk-for-brain-and-spinal-cord-defects-study-shows.html

The RDA for choline in Pregnancy is 450 mg per day. "The DV for choline is 550 mg for adults"; "In adults, the average daily choline intake from foods and beverages is 402 mg in men and 278 mg in women."; "Plasma choline levels do not decline below 50% of normal, even in individuals who have not eaten for more than a week". https://ods.od.nih.gov/factsheets/Choline-HealthProfessional/.  Liver, eggs, beef or Phosphatidyl Choline supplements. Blood tests are not indicative of intake.

Congratulations 🥳🥳 And I’m still learning lol I have to look up everything you just wrote me 🙏😌😌😌 I’m so grateful for all this information I went to the doctor today 🙏 and they did blood work

[Russ H]

13 hours ago, Quanika Carter said:

Congratulations 🥳🥳 And I’m still learning lol I have to look up everything you just wrote me 🙏😌😌😌 I’m so grateful for all this information I went to the doctor today 🙏 and they did blood work

Congratulations!

Don't wait for test results, get on a folic acid (folate) supplement immediately if you are not already doing so. 400 mcg per day is the recommended dose (might be slightly more in the US). Reduces the risk of neural tube defects amongst other things. Don't delay this one.

https://www.nhs.uk/pregnancy/keeping-well/vitamins-supplements-and-nutrition/

[trents]

I agree with Russ314 on taking folate to prevent neurological tube defects. My wife and I lost an anencephalic child years ago and found out later it likely could have been prevented by folic acid supplementation.

[Quanika Carter]

1 hour ago, trents said:

I agree with Russ314 on taking folate to prevent neurological tube defects. My wife and I lost an anencephalic child years ago and found out later it likely could have been prevented by folic acid supplementation.

I’m getting everything today 🙏

[Wheatwacked]

Other studies have shown that folate requirements are inversely related to choline status. It was a sad day when they convinced us that eggs and red meat are bad. I think it was a diversion from that fact that grain fed meat and eggs alters the omega-3 to omega-6 ratio in our food, increasing inflammation. Fish oil has more omega-3. Maybe it is just a coincidence that fish oil is made from fish that don't eat wheat and other grains?

"Choline (Cho)-containing phospholipids are the most abundant phospholipids in cellular membranes and play fundamental structural as well as regulatory roles in cell metabolism and signaling.   https://www.pnas.org/doi/10.1073/pnas.0907864106"

Quote

Folic acid is known to reduce risk of neural tube defects (NTDs). Even so, NTDs continue to occur despite individual supplementation or population fortification with folic acid. We investigated other nutrients related to one-carbon metabolism that may affect NTD risk.

Serum specimens were tested for methylmalonic acid, homocysteine, cysteine, methionine, total choline, betaine, cystathionine, vitamin B6, folate, vitamin B12, riboflavin, and creatinine.

Results: 

We observed elevated NTD risks associated with lower levels of total choline, and reduced risks with higher levels of choline. Specifically, we observed an odds ratio of 2.4 (95% confidence interval = 1.3–4.7) associated with the lowest decile and an odds ratio of 0.14 (0.02–1.0) associated with the highest decile, both relative to the 25th–74th percentiles of the control distribution. These data did not show meaningful differences between cases and controls for any other analytes.

We found a strong linear association of total choline with decreased NTD risk. Choline, known primarily in the diet as a component of lecithin, is key to several metabolic processes. Like folate, choline is involved in one-carbon metabolism, it is used for the synthesis of cell membrane phospholipids, and it is a precursor of the neurotransmitter, acetylcholine. The demand for choline is thought to be higher during pregnancy. Our observed association with choline is unlikely to be explained by differential use of prenatal vitamin supplements between case and control mothers because choline is not a typical component of multivitamin supplements.

In general, studies have observed elevated NTD risks associated with elevated levels of homocysteine, lowered levels of serum folate, and lowered levels of vitamin B12. In a Canadian setting of moderate folic acid tablet supplement use and universal folic acid flour fortification,2 these data suggest that about 34% of NTD may be due to low B12....For more than 3 decades, evidence has accumulated to show that periconceptional nutrient intakes—particularly folate—lower risks of NTD-affected pregnancies. Although fortification of the US food supply with folic acid is associated with a decreased prevalence of NTDs,2 there is still a substantial population burden of these serious birth defects.   https://journals.lww.com/epidem/Fulltext/2009/09000/Choline_and_Risk_of_Neural_Tube_Defects_in_a.17.aspx

 

Quote

Using a sensitive and specific measure of bioavailable cobalamin, we observed nearly a tripling in the risk of NTD in the presence of low maternal B12 status.   https://journals.lww.com/epidem/Fulltext/2007/05000/Vitamin_B12_and_the_Risk_of_Neural_Tube_Defects_in.13.aspx

 

[Russ H]

On 3/1/2022 at 9:12 PM, trents said:

I agree with Russ314 on taking folate to prevent neurological tube defects. My wife and I lost an anencephalic child years ago and found out later it likely could have been prevented by folic acid supplementation.

That is very sad. I am sorry to hear that.

[Russ H]

On 3/1/2022 at 10:29 PM, Quanika Carter said:

I’m getting everything today 🙏

Let us know how you get on. Lots of knowledgeable people on this forum who can give advice.

[trents]

1 hour ago, Russ314 said:

That is very sad. I am sorry to hear that.

I appreciate your sympathetic response. Years later our son and his wife had the same experience. So, it is something that needs to be heeded. Thank goodness we now know so much more about why these things happen that people did years ago.