Problems

[cjjones5969]

I was diagnosed celiac January 2023, with no symptoms.  I have been on the gluten free diet since, but since the 6th month of the diet to date, I have developed symptoms-stomach pains, bloating, distended stomach, headacres and I am always hungry despite actually eating more.  The dietitican says I'm doing great, my doctor is pleased, but I'm confused.  Shouldn't I be getting better?

[Scott Adams]

Do you eat out in restaurants? This is a common source of contamination. The first step for you would be to re-examine your diet to be sure that it is 100% gluten-free.

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

[trents]

Welcome to the forum, @cjjones5969!

Just out of curiosity, if you had no symptoms, what led to your diagnosis?

You may have developed some additional food intolerances which is very common in the celiac community, particularly with foods whose proteins are similar to gluten. Chief suspects are dairy and oats, even gluten free oats. The protein casein in dairy and the protein avenin in oats are similar to gluten. But it can be almost anything. Those two are very common offenders, however.

[cjjones5969]

17 hours ago, Scott Adams said:

Do you eat out in restaurants? This is a common source of contamination. The first step for you would be to re-examine your diet to be sure that it is 100% gluten-free.

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

I live in a very small town, we have 2 restaurants and 3 cafes, none of which I go to.  All have gluten.  To travel even to the next town, I carry pre-prepared food with me and of course water. I have downloaded many lists of gluten free food stuffs, medications and skin care so I do not use any gluten.  My doctor put me on iron tablets with Vitamin C and Calicum tablets with Vitamin D, and we checked that these were gluten free.  I don't use any skin care unless it is gluten free, and I have to travel to find this.  I have also downloaded lists of food additives and intolerances so I can re-check everything before I consider purchasing it.  I also have an extensive list of food colourings and dyes in case these are causing problems.  I prepare all my own food in a safe manner and do not share cooking utensils. This is why I don't get it.

[A.C.123]

Those iron tablets are probably your current culprit for stomach pain. I am also anemic and was prescribed the iron tablets as well. I wouldn’t wish those things on my worst enemy! They constipate me horribly and cause the most awful abdominal pain! I refuse to take them. I’m trying gentle iron right now and I think it’s still bloating me. 

[cjjones5969]

Sorry if I'm doing this wrong, but I've never been in a forum before.  I was diagnosed as a celiac when I went to the doctor for unusual weight loss because my children thought it would be a good idea.  I have complex PTSD, which I've had since I was 17.  They used to call it Maniac Depression then, and I dealt with it through diet, exercise and mediation.  No drugs, my family live to be very old-95 plus, and I didn't want to start on drugs especially so early on. I thought the weight loss was from my absolute best friend dying, the stress of dealing with it and all his legal and other problems.  I was also his enduring guardian through his cancer battle.

So the doctor thought I now had Celiacs, and I went to a specialist doctor who only deals with this, was diagnosed and confirmed by biopsy in January 2023. I live in a town which has 2 restuarants and 3 cafes-none of which can be guaranteed gluten-free, so I pre-prepare all my meals on a weekly basis, cook these myself in my own kitchen and do not share any utensils of any kind.  I have lists of food additives so I know which to use, including colourings and preservatives.  I have a list of medications I downloaded from Mayo Clinic so I can avoid the wrong ones.  My doctor put me on iron tablets-for iron deficiency-these have Vitamin C-and calcium tablets with Vitamin D for my bones.  I am 65, have rarely been ill, except for dyhration problems with my second pregnancy, and now I have Osteo problems as well-which are actually improving with diet and exercise.  I weight lift and have done so since 17 or 18 years of age.

This is why I'm very confused about the symptons I now have. 

[knitty kitty]

Welcome to the forum, @cjjones5969

Are you eating much processed gluten free facsimile foods?  

Keep in mind that gluten free processed foods, like gluten free breads, pasta and cookies, are not required to be enriched with vitamins and minerals.  Flours containing gluten are required to be enriched with vitamins and minerals lost in processing.  Eating a diet high in carbohydrates requires additional Thiamine and other B vitamins to turn the carbohydrates into energy.  Early Thiamine deficiency can manifest as "Gastrointestinal Beriberi" which results in abdominal pain,  bloating and gastroparesis.  

The Gluten Free diet can be low in essential nutrients, like the B vitamins, Vitamin D, and minerals like iron.  

Talk to your doctor and nutritionist about supplementing with B vitamins which boosts the absorption of these essential nutrients.    

@A.C.123, I agree, iron supplements can cause constipation.  Have you tried taking iron supplements at bedtime, with a Vitamin C supplement?  Taking mine this way helps immensely.  

[knitty kitty]

@cjjones5969,

Unintended weight loss is a symptom of Thiamine deficiency.  Gluten free processed foods are not required to be enriched with vitamins like gluten containing flours and products made with them.  Switching to a gluten free diet can precipitate vitamin deficiencies.

Celiac Disease damages the small intestine where vitamins like Thiamine and the other B vitamins  are absorbed.  B Vitamins cannot be stored for long in the body, so we need to consume sufficient quantities every day.  Thiamine can be stored the least amount of time (21days), and because our bodies require so much of it, thiamine runs out first.  Unexplained weight loss is a symptom of Thiamine deficiency disorder.  

Please discuss supplementation with B vitamins with your doctor and nutritionist.  B vitamins are water soluble and any excess is easily excreted if not needed.  Thiamine is nontoxic and safe.  Benfotiamine, a form of Thiamine, has been scientifically shown to promote intestinal healing.  Blood tests for B vitamins are not accurate.  The best way to see if you're low in B vitamins is to take them and look for improvement in health.  

Thiamine works with magnesium to make life sustaining enzymes.  Magnesium is also needed to keep calcium in the bones.  Magnesium should also be supplemented when taking Calcium.  

Hope this helps! 

Keep us posted on your progress!

[Scott Adams]

17 hours ago, cjjones5969 said:

I live in a very small town, we have 2 restaurants and 3 cafes, none of which I go to.  All have gluten.  To travel even to the next town, I carry pre-prepared food with me and of course water. I have downloaded many lists of gluten free food stuffs, medications and skin care so I do not use any gluten.  My doctor put me on iron tablets with Vitamin C and Calicum tablets with Vitamin D, and we checked that these were gluten free.  I don't use any skin care unless it is gluten free, and I have to travel to find this.  I have also downloaded lists of food additives and intolerances so I can re-check everything before I consider purchasing it.  I also have an extensive list of food colourings and dyes in case these are causing problems.  I prepare all my own food in a safe manner and do not share cooking utensils. This is why I don't get it.

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful:

 

 

[Wheatwacked]

On 10/10/2024 at 10:45 PM, cjjones5969 said:

Maniac Depression

I'm guessing it was Manic Depression.

I was depressed for 30 years.  It did not go away until I increased vitamin D3 to 10,000 IU (250 mcg) a day.  Three days after going from 8000 IU to 10,000 IU a great dark cloud lifted.

Unless you are deficient in Calcium intake from food, don't supplement with calcium.  A high Parathyroid Hormone PTH blood test would indicate insufficient vitamin D causing calcium absorption problems..  High intakes of calcium can be associated with coronary artery calcification. In one study, calcium and vitamin D supplementation accelerated vascular calcification. Thousands of studies of vitamin D supplementation without Calcium have shown that vitamin D is safe even as much as 20,000 IU a day. Vitamin D Is Not as Toxic as Was Once Thought

On 10/10/2024 at 6:25 PM, cjjones5969 said:

stomach pains, bloating, distended stomach, headacres and I am always hungry despite actually eating more.  The dietitican says I'm doing great, my doctor is pleased

That is confusing.

Many gluten processed foods are fortified with vitamins that you no longer get with gluten-free foods.  Doctors don't recognize this as Knitty Kitty mentions.

Sorry for the loss of your friend.  

I see a pattern where a person with low vitamin D has a stressful situation, mentally or physically like Covid or a cold even allows the immune system to get out of control.  Low vitamin D is common in Celiac Disease.  You seem to fit the pattern.

Low choline (eggs and meat) can cause problems digesting fat and Low Thiamine can cause gastrointestinal beriberi.  Iodine deficiency is a growing concern.  Low B12 can be the cause of anemial is you are vegan.