Positive for several rare inherited diseases and now looks like also celiac.

[Kim L]

Biopsies and celiac panel came back positive.  See doctor next week.  I also have polycystic liver disease (inherited rare disease), and my makers have been off for 3 years.  My then doctor thought I had hepatitis and was shocked when wasn't confirmed.  My new doctor got the biopsy and now labs yesterday. my Albumin globulin is high, my free T4 is low and my globulin is very low.  My skin feels like sand paper no matter what I do and getting worse every day.  Has anyone else had this problem and if so, did you find something that worked for you?  My dermatologist told me to use the Cerave Cream in a jam and works ok but wonder if anyone has used something that works for them.  Looking for any advice.  Have lost lot of weight, aged about 10 yrs, am malnourished and dehydrated.  Will this get any better??

Any advice is appreciated.  Thank you!  Kim

[trents]

Welcome to the forum, Kim L.

Celiac disease can also cause elevated liver enzymes and, if it goes on long enough, liver disease. That was me and what ultimately led to my celiac disease diagnosis. I had mildly elevated liver enzymes for 13 years which could not be explained. I was tested for hepatitis A-Z and several other potential medical problems that might cause elevated liver enzymes but after celiac disease diagnosis and going gluten free my liver enzymes had normalized within a few months. 18% of celiacs have elevated liver enzymes.

Hashimoto thyroid disease is very common in the celiac population, as are a number of other autoimmune conditions. I noted your low T4. 

You really need to focus on getting your nutritional status up to par with some good gluten-free supplements. Adult Multivitamin, High Potency B-complex, sublingual B12, 5000IU of D3, magnesium (glycinate or citrate forms are best assimilated). Because of the damage done to the villi that line your small bowel you haven't been absorbing nutrients from your food very efficiently for a long time, I'm guessing. Costco's Kirkland and Nature Made lines of vitamins and supplements are good choices. Most are gluten-free and if so will say so clearly on the label.

Edited August 31, 2022 by trents

[Wheatwacked]

2 hours ago, trents said:

You really need to focus on getting your nutritional status up to par

That is it in a nutshell.  Once done with diagnostics for Celiac you need to be totally gluten free. Stick to foods from the Haas or Fasamo diets at first. They have good results.  Even if you still need to continue eating gluten to complete testing for Celiac Disease you can start eating these foods for a quicker,healtier recovery, just make sure 

You might try Dr Haas's diet for recovery THE VALUE OF THE BANANA IN THE TREATMENT OF CELIAC DISEASE SIDNEY V. HAAS, M.D. It was used from 1920 to 1950 to treat celiac before gluten was identified as the cause. It fell out of favor because once healed the patient was returned to a "normal diet" with gluten so the gains would often be lost. As they say " the baby with the bath water". After years of GFD I tried this and had significant improvement.

">Heretofore it has been impossible in the severe cases to give any carbohydrate without damage, whereas banana is not only well tolerated, but rapidly changes the entire picture of the disease to one of well being. <"

Table 1.—The Typical Diet:

• Plain milk should not be given
• Albumin milk. (whey)
• Pot cheese (milk 16 oz.) Farmers or Cottage Cheese (curds)
• Banana.
• Orange.
• Vegetables.
• Gelatin.
• Meat.

Fasano Diet: See Table 1 in this link for Products allowed/disallowed in the Gluten Contamination Elimination Diet (GCED), targeting the elimination of gluten cross-contamination  Trace gluten contamination may play a role in mucosal and clinical recovery in a subgroup of diet-adherent non-responsive celiac disease patients

Many of your symptoms will improve with just GFD but you also need to reverse the various nutrient deficiencies. Here is my list below. Choline is essential for liver health. The safe range is 550 to 3000 mg/day. 

Quote

Healthy humans with normal folate and vitamin B-12 status who were fed a choline-deficient diet developed fatty liver, liver damage [elevated plasma alanine (or aspartate) transaminase] or developed muscle damage (elevated creatine phosphokinase) that resolved when choline was restored to the diet (4,6). Elevations in markers of DNA damage (7) and alterations in lymphocyte gene expression (8) were also observed in choline deficiency. During pregnancy, women in the lowest quartile of dietary choline intake had a higher risk of having a baby with a neural tube defect (NTD)3 or cleft palate (9,10).   https://academic.oup.com/advances/article/1/1/46/4657096

 

My

[Kim L]

On 8/31/2022 at 2:14 PM, Kim L said:

Biopsies and celiac panel came back positive.  See doctor next week.  I also have polycystic liver disease (inherited rare disease), and my makers have been off for 3 years.  My then doctor thought I had hepatitis and was shocked when wasn't confirmed.  My new doctor got the biopsy and now labs yesterday. my Albumin globulin is high, my free T4 is low and my globulin is very low.  My skin feels like sand paper no matter what I do and getting worse every day.  Has anyone else had this problem and if so, did you find something that worked for you?  My dermatologist told me to use the Cerave Cream in a jam and works ok but wonder if anyone has used something that works for them.  Looking for any advice.  Have lost lot of weight, aged about 10 yrs, am malnourished and dehydrated.  Will this get any better??

Any advice is appreciated.  Thank you!  Kim

Thank you all for the support, information and advice.  I have so many additional issues and they sometimes counter each other so has been a huge learning curve for me.  

[Kim L]

On 8/31/2022 at 2:31 PM, trents said:

Welcome to the forum, Kim L.

Celiac disease can also cause elevated liver enzymes and, if it goes on long enough, liver disease. That was me and what ultimately led to my celiac disease diagnosis. I had mildly elevated liver enzymes for 13 years which could not be explained. I was tested for hepatitis A-Z and several other potential medical problems that might cause elevated liver enzymes but after celiac disease diagnosis and going gluten free my liver enzymes had normalized within a few months. 18% of celiacs have elevated liver enzymes.

Hashimoto thyroid disease is very common in the celiac population, as are a number of other autoimmune conditions. I noted your low T4. 

You really need to focus on getting your nutritional status up to par with some good gluten-free supplements. Adult Multivitamin, High Potency B-complex, sublingual B12, 5000IU of D3, magnesium (glycinate or citrate forms are best assimilated). Because of the damage done to the villi that line your small bowel you haven't been absorbing nutrients from your food very efficiently for a long time, I'm guessing. Costco's Kirkland and Nature Made lines of vitamins and supplements are good choices. Most are gluten-free and if so will say so clearly on the label.

Thank you Trent, am glad I have found this group!

[Elwinfrost]

Anybody diagnosed with pancreatic ipmn and then find out they are celiac? I've also had Hashimoto's for 30 years and what my then-doctor insisted was IBS. She never tested me for celiac - there's a lot I can't eat even among gluten-free foods. No fats, no garlic or onions, no dairy - just a mess. I'm hungry and my new doctor cannot find a gastroenterologist who will treat celiacs (just diagnose them). I'm in Canada, so health care is free but not dieticians or some nutritional bloodwork.

[trents]

Welcome to the forum, Elwinfrost!

I am not clear on the question of whether or not you have been officially diagnosed with celiac disease. Can you elaborate on that please?

I'm not aware of any treatment for celiac disease apart from the gluten free diet.

I understand that with your pancreatic ipmn fats are likely contraindicated. Yet, there are some important nutritional elements that are fat soluble. For instance, vitamin E, vitamin A and vitamin D. Are you taking any vitamin and mineral supplements?

In addition, dietary fat is very satisfying and curbs hunger.

[Elwinfrost]

I was diagnosed celiac two weeks ago, yes, with endoscopy and very high blood markers. The ipmns were found in June on ultrasound, then confirmed MRI - trying to get an endoscopic ultrasound, now.

I have not been able to see a specialist who can advise about supplements but the surgeon who is monitoring the ipmn told me I can eat anything I want, that only alcohol and smoking affect cancer risk. He was not a good listener, to be honest, as he denied that I have any gastric problems related to ipmn. In fairness, I did have undiagnosed celiac at the time. 

 

Thank you for responding to my remarks.

[trents]

Thanks for the extra info, Elwin.

You may be amazed at how much better you will feel if you get serious about eating gluten free. The constant gut inflammation caused by celiac disease, over time, destroys the villi that line the small bowel. These villi are where all of our nutrition is absorbed. So, even if we are eating well, the nutrients are not being utilized efficiently. Vitamin and mineral deficiencies almost always accompany long term undiagnosed celiac disease. This may be a driver in why you are so hungry. Going gluten-free will allow the villi to heal but it can take two years or more of gluten-free eating for the healing to be complete. However, you should start noticing a difference much sooner. Adding some gluten-free vitamins and minerals will help get your nutritional status in a good place faster. Most of the time we recommend an adult multivitamin, sublingual B12, B-complex, magnesium citrate or magnesium glycinate, 5000IU of D3. Make sure they are gluten free as wheat starch can be used as a filler in pills. If you have Costco where you live, there Kirkland Signature series and Nature Made products are good choices and will state clearly on the bottle if they are gluten-free and most of them are. Don't worry about overdosing on the B vitamins. They are water soluble and the excess is peed out.

This may help you get started on the gluten-free diet: 

 

[Elwinfrost]

Thank you so much for this. And, not to overstay my welcome, but do you know about taking pancreatic enzymes to process fats better (even small amounts of healthy fats such as nuts make me sick)?

[trents]

7 minutes ago, Elwinfrost said:

Thank you so much for this. And, not to overstay my welcome, but do you know about taking pancreatic enzymes to process fats better (even small amounts of healthy fats such as nuts make me sick)?

No, I cannot comment on that. Perhaps another forum member has experience with pancreatic enzymes. What I can tell you, however, is that undigested fat in the stool is one of the classic symptoms of celiac disease. Again, this goes back to the damage done to the SB villi.

[Elwinfrost]

Thank you. 🙂

[Wheatwacked]

Estimates are that only 10% eating a western diet eat enough choline. Primary sources are liver, red meat and eggs. Milk also. All foods we were encouraged to cut back on for cholesterol control, but to me it seems it hasn't helped. But lots of people with gall bladder surgeries.  Three eggs a day or 10 cups of cooked brocolli to meet the minimum RDA for choline and from the NHANES studies it appears higher intake levels of choline have better health.

"Choline is considered a bile salt and it plays a pivotal role in the digestion of fats. These bile salts act as an emulsifying agent and break fats into fatty acids." Choline is one of the most abundant salts in bile and helps keep the body clean

I have found that a few teaspoons of Inulin a day, a soluable fiber,  in addition to sufficient choline seems to be reducing the size of the belt of my belly fat.

Homocysteine blood levels may be an indicator of not enough choline in the diet. Homocysteine is the sludge created by fat and protein metabolism and folate and choline together work to recycle homocysteine to methionine. Betaine as mentioned below, is a byproduct of choline Although we've know about choline for over one hundred years, it's importance has still not be accepted by the medical industry so doctors will remove a gall bladder before suggesting eating more eggs. Not unlike prescribing PPIs before suggesting Gluten Free or transplant a liver before adding choline to parenteral feedings. Clearing the homocysteine toxic sludge is so important that there are two paths of methylization. Choline and Folate. Pyridoxal phosphate is the active form of vitamin B₆. I guess that actually makes three paths.

"Homocysteine is a sulfur amino acid whose metabolism stands at the intersection of two pathways: remethylation to methionine, which requires folate and vitamin B12 (or betaine in an alternative reaction); and transsulfuration to cystathionine, which requires pyridoxal-5'-phosphate. :"Homocysteine metabolism

Edited September 14, 2022 by Wheatwacked
typo

[trents]

10 cups of cooked broccoli? Yuk!

[Wheatwacked]

I can't fit 10 cups of anything in my stomach😀

How about a 3 ounce top round steak, 2 eggs and and only 2 1/2 cups of broccoli for breakfast?

• Egg, hard boiled, 1 large egg.  147 mg per serving. 27% DV.
• Beef top round, separable lean only, braised, 3 ounces. 117 mg per serving. 21% DV.
• Broccoli, chopped, boiled, drained, ½ cup. 31 mg per serving.  6% DV

Choline Fact Sheet for Health Professionals for complete list.

 

 

 

 

[trents]

Broccoli for breakfast? No way!

[GF-Cate]

On 9/7/2022 at 9:35 AM, Elwinfrost said:

Thank you so much for this. And, not to overstay my welcome, but do you know about taking pancreatic enzymes to process fats better (even small amounts of healthy fats such as nuts make me sick)?

These articles may be helpful: Pancreatic Elastase, Fat Digestion and Hashimoto’s and Using Enzymes to Overcome Hashimoto’s

Since you also have Hashimoto's (celiac and Hashimoto's are autoimmune diseases that are thought to have a common genetic predisposition), her site may be very helpful.

[Elwinfrost]

Thank you so much for this.

[Posterboy]

On 9/6/2022 at 3:56 PM, Elwinfrost said:

Anybody diagnosed with pancreatic ipmn and then find out they are celiac? I've also had Hashimoto's for 30 years and what my then-doctor insisted was IBS. She never tested me for celiac - there's a lot I can't eat even among gluten-free foods. No fats, no garlic or onions, no dairy - just a mess. I'm hungry and my new doctor cannot find a gastroenterologist who will treat celiacs (just diagnose them). I'm in Canada, so health care is free but not dieticians or some nutritional bloodwork.

Elwinfrost,

You might consider taking some Betaine HCL (aka Powdered Stomach Acid).....

Here is a nice article that explains how and why Low Stomach Acid can be a trigger for your Hashimoto's....

https://thyroidpharmacist.com/articles/hashimotos-and-low-stomach-acid/

Also Low Thiamine levels have been to be common in Hasimoto's and is thought, in part, to be the reason for the Fatigue common in Hashi's...

Here is an article about it.

Entitled "Thiamine and Hashimoto's thyroiditis: a report of three cases"

https://pubmed.ncbi.nlm.nih.gov/24351023/

When we get low in Stomach Acid we are low in Thiamine which can help Thyroid problems etc….

You can do a Baking Soda home self test for Low Stomach acid to confirm how low your stomach acid is?

Here is a nice article about it.

https://drjockers.com/5-ways-test-stomach-acid-levels/

I think you will be suprised how low it actually is....

I hope this is helpful but it is not medical advice.

Posterboy,

[Kim L]

Thank you everyone for all the advice and information.  It does help.  So difficult when so much is really left up to the individuals regarding diet. It is life altering.

[Maddie6332]

On 9/14/2022 at 10:21 AM, trents said:

10 cups of cooked broccoli? Yuk!

I'm not a huge fan of hard boiled eggs, but I'm not trying to be rude and I'm sorry if I am but eating broccoli for breakfast is NOT my thing. I'm sorry!

[knitty kitty]

I agree, @Maddie6332,

Broccoli is not a breakfast food!

🐱

[Elwinfrost]

Thank you for all this information - I haven't been back in to check it for awhile!

[Maddie6332]

On 8/31/2022 at 5:14 PM, Kim L said:

Biopsies and celiac panel came back positive.  See doctor next week.  I also have polycystic liver disease (inherited rare disease), and my makers have been off for 3 years.  My then doctor thought I had hepatitis and was shocked when wasn't confirmed.  My new doctor got the biopsy and now labs yesterday. my Albumin globulin is high, my free T4 is low and my globulin is very low.  My skin feels like sand paper no matter what I do and getting worse every day.  Has anyone else had this problem and if so, did you find something that worked for you?  My dermatologist told me to use the Cerave Cream in a jam and works ok but wonder if anyone has used something that works for them.  Looking for any advice.  Have lost lot of weight, aged about 10 yrs, am malnourished and dehydrated.  Will this get any better??

Any advice is appreciated.  Thank you!  Kim

I don't know if it will get any better, I don't think I ever will know honestly, but I hope everything will work out in the end. 

[Maddie6332]

On 10/14/2022 at 12:21 PM, Elwinfrost said:

Thank you for all this information - I haven't been back in to check it for awhile!

Haha! Me neither, I haven't checked in 2 weeks! 🤭